I have dementia and I am really struggling to find anyone to talk to. Most forums are for people who care for someone and not someone like me who is struggling, especially with sundowning. I don't know where to go for help and my husband and I are haviong a bad time right now
Dementia Sufferer
- Thread starter holly1807
- Start date
Hello Holly, and welcome to Talking Point. I am sorry you and your husband are having such a hard time. I do hope you can find some help on the 'I Have Dementia' thread pamman suggested. Perhaps you could start your own thread?
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Hi Holly
My name is Denise. I have the dreaded "d". I am still working but will retire this year at age 62. At first I had lots of anxiety! Lots of it!!!
I couldn't function. Now, I sometimes laugh at the things I do. I realize that there is little I can do about it. I have learned some strategies for getting through the day. I never cook in the AM -use my phone to remind me of what I should be doing each waking hour-use a little OCD to double check appliances, etc. I use to wear my clothes inside out or forget other things-now I am more mindful with gadgets that help. I forget how to use can openers or why I have it in my hand.
You will find helpful info here and different types of dementia.
My name is Denise. I have the dreaded "d". I am still working but will retire this year at age 62. At first I had lots of anxiety! Lots of it!!!
I couldn't function. Now, I sometimes laugh at the things I do. I realize that there is little I can do about it. I have learned some strategies for getting through the day. I never cook in the AM -use my phone to remind me of what I should be doing each waking hour-use a little OCD to double check appliances, etc. I use to wear my clothes inside out or forget other things-now I am more mindful with gadgets that help. I forget how to use can openers or why I have it in my hand.
You will find helpful info here and different types of dementia.
hi holly plenty of lovely people on here and most have been where you are now.Its a lovely place to come and it really is like a loving extended family.Take care and best wishes
love ossie xxx
ps as you can see i am not the best writer of words on here lol
love ossie xxx
ps as you can see i am not the best writer of words on here lol
Hi, Holly.. Thank you for sharing yourself with us. I am certainly no expert on dementia but I do have it, (I am told it's vascular dementia), and because of it I am learning new things about it and myself almost daily. All I can do is hold on to what works for me right now--and I am learning that sometimes not everything that worked well for me last week will work for me today. For example, just this morning I had an incident that involved my banking habits and this experience left me sobbing, confused and angry...reactions I never would have had in the not so distant past. (But my dementia is robbing me of my emotional filters and I am prone to 'knee-jerk' reactions....sometimes saying hurtful things to others in the process.) This alerts me that I'm going to have to come up with a whole different plan in this area of my life. Sometimes the burden of dementia is great but I have found that it's only that way if I don't share it out with others. That is why I stay close to this forum and the people who share themselves here.
I live alone. I have a son and daughter who provide some emotional and, when they can, physical support. I have a few friends who haven't jumped ship yet but it's difficult for them I think-- it's the old saying: 'they have their own lives to live'. This makes me feel obligated to teach them what I can in regards to how I am affected by it. To be honest, I sometimes would rather not be the teacher. Sometimes I think it would be so nice if someone could just sit with me and ask me how I feel, what I need, what I'm experiencing, etc., and then give me the time I need to respond. There is another web site group where the saying: "Not about me without me" is used. I like that.
What I have learned is this: I can be my own worst enemy by not opening up. I am told that by actively sharing here I am helping not only myself but others. The experiences that my Talking Point friends share are life-giving for me. They give me hope. They tell me I am not crazy. They tell me that even at my worst I am worthy of love and respect. They make me smile and laugh and sometimes even cry. Please stay with us and you will experience these things regardless of your circumstances now. Please feel free to private message me anytime. You are not alone.
Peace and that in abundance to you, Holly..and to us all...LoisJean
I live alone. I have a son and daughter who provide some emotional and, when they can, physical support. I have a few friends who haven't jumped ship yet but it's difficult for them I think-- it's the old saying: 'they have their own lives to live'. This makes me feel obligated to teach them what I can in regards to how I am affected by it. To be honest, I sometimes would rather not be the teacher. Sometimes I think it would be so nice if someone could just sit with me and ask me how I feel, what I need, what I'm experiencing, etc., and then give me the time I need to respond. There is another web site group where the saying: "Not about me without me" is used. I like that.
What I have learned is this: I can be my own worst enemy by not opening up. I am told that by actively sharing here I am helping not only myself but others. The experiences that my Talking Point friends share are life-giving for me. They give me hope. They tell me I am not crazy. They tell me that even at my worst I am worthy of love and respect. They make me smile and laugh and sometimes even cry. Please stay with us and you will experience these things regardless of your circumstances now. Please feel free to private message me anytime. You are not alone.
Peace and that in abundance to you, Holly..and to us all...LoisJean
Lovely post LoisJean. I can echo so much of what you say, as well as admiring the way you say it.
Sometimes I think it would be so nice if someone could just sit with me and ask me how I feel, what I need, what I'm experiencing, etc., and then give me the time I need to respond.
My son and daughter are pretty good in general, but really they have such a lot in their lives right now. When I start on the sad story of what it's like for me having dementia, I get caught up in thoughts of how much worse off others are than me and feel rather ashamed. Sophie tells me that's not the point, but for me it is. So even when someone does ask, I guess I tend to sabotage myself.
Sometimes I think it would be so nice if someone could just sit with me and ask me how I feel, what I need, what I'm experiencing, etc., and then give me the time I need to respond.
My son and daughter are pretty good in general, but really they have such a lot in their lives right now. When I start on the sad story of what it's like for me having dementia, I get caught up in thoughts of how much worse off others are than me and feel rather ashamed. Sophie tells me that's not the point, but for me it is. So even when someone does ask, I guess I tend to sabotage myself.
Not coping
I was diagnosed in August but think I have had this since my stroke in 2014. I am really struggling to cope with this. The worst think is my anger, I am normally quite a placid person but lately I seem to get so angry at the slightest thing.
Yesterday afternoon I went into the bathroom to was my face and realised I still had my glasses on, instead of laughing as I would normally do and calling myself a silly so and so I launched my glasses at the wall and broke a £400 pair of glasses. I have started spending most of my time alone because I am so afraid of my outbursts. I seem to be like a coiled spring all the time.
I went out to the shop and got lost now I just don't want to go out
I was diagnosed in August but think I have had this since my stroke in 2014. I am really struggling to cope with this. The worst think is my anger, I am normally quite a placid person but lately I seem to get so angry at the slightest thing.
Yesterday afternoon I went into the bathroom to was my face and realised I still had my glasses on, instead of laughing as I would normally do and calling myself a silly so and so I launched my glasses at the wall and broke a £400 pair of glasses. I have started spending most of my time alone because I am so afraid of my outbursts. I seem to be like a coiled spring all the time.
I went out to the shop and got lost now I just don't want to go out
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am real sorry about your distress holly and can only say that as a fellow traveller with vascular along the dementia highway, it is a very bumpy ride. i have emotional trips most days and as a 'big boys don't cry' surviver, it is hard to cope with uncontollable and unexplainable emotions. i laugh manically at times, cry for no real reason, feel happy when i have nothing to be happy about and feel sad at times when things seem ok. all mad stuff. on the whole my memory is ok but my character and personality changes drive me, and others, to despair but we have to just keep on and try to view each new day and new way as just another new and interesting adventure. do not give in or up or down or whatever way you see things today...... it will be different tomorrow just as everything is when you think you have a handle on it. lol.
share it all on here, good, bad, happy, sad but share it for your sanity. we are people living with dementia but then so are all those around us, everyone we know now lives with our dementia so share it out. the more that know how it is, how you are feeling, how you are coping or not coping, the better it will be for you and everyone else.
DO NOT LET IT WIN!!!!!! Go out and still enjoy the wonderful things in life that you still have left and try not to dwell on what was, think of what can be.
you are most welcome to contact me via the blog at any time to compare adventures.
good luck
Wayne
share it all on here, good, bad, happy, sad but share it for your sanity. we are people living with dementia but then so are all those around us, everyone we know now lives with our dementia so share it out. the more that know how it is, how you are feeling, how you are coping or not coping, the better it will be for you and everyone else.
DO NOT LET IT WIN!!!!!! Go out and still enjoy the wonderful things in life that you still have left and try not to dwell on what was, think of what can be.
you are most welcome to contact me via the blog at any time to compare adventures.
good luck
Wayne
Still not coping
Every time I think I get myself together something else slaps me in the face.
When I first had my stroke that was bad enough but soon as I had got over that, or so I thought, I was diagnosed with focal epilepsy. I was just coming to terms with that ,and the Keppra was helping, Then I get diagnosed with Vascular Dementia. I thought to myself "oh well, no need to make excuses for the silly things I do now like trying to wash my face with my glasses on lol, I can blame it on the dementia".
Now they have diagnosed me with Congestive heart failure and I am thinking how much more of this can I really take.
Every time I think I get myself together something else slaps me in the face.
When I first had my stroke that was bad enough but soon as I had got over that, or so I thought, I was diagnosed with focal epilepsy. I was just coming to terms with that ,and the Keppra was helping, Then I get diagnosed with Vascular Dementia. I thought to myself "oh well, no need to make excuses for the silly things I do now like trying to wash my face with my glasses on lol, I can blame it on the dementia".
Now they have diagnosed me with Congestive heart failure and I am thinking how much more of this can I really take.
Bless you Holly
I only just noticed your post I am sorry I hadn't seen it earlier.
I too had a stroke and a diasgnosis of dementia. I do get very frustrated at times esp when people don't understand. I struggle with things like cooking but In the words of the fridge magnet 'I Keep Calm and Carry On' well I do Carry on but I dont always keep calm. Today was a bad day I could have cheerfully thrown in the towel but I am too proud to give in!
To compensate I try and do something nice.At the moment I am enjoying writing stories and watching videos on youtube. I like funny ones.
Hope tomorrow is a better day
I only just noticed your post I am sorry I hadn't seen it earlier.
I too had a stroke and a diasgnosis of dementia. I do get very frustrated at times esp when people don't understand. I struggle with things like cooking but In the words of the fridge magnet 'I Keep Calm and Carry On' well I do Carry on but I dont always keep calm. Today was a bad day I could have cheerfully thrown in the towel but I am too proud to give in!
To compensate I try and do something nice.At the moment I am enjoying writing stories and watching videos on youtube. I like funny ones.
Hope tomorrow is a better day
