Hi, I'm new to this. I was diagnosed about 2 years ago with Early Onset Dementia I'm 53 and starting to have more bad days than I used to. Some days I feel great even normal but lately, I'm feeling quite nasty, I don't want to but it's there. I'm beginning to feel as if I want to be in a room on my own and left alone, is this normal? Hubby takes me out most days even if it's just for walks or a drive in the car. I'm fine until we bump into someone we know and they start speaking to me, my words won't come out and if they do they don't make sense. Is there an easy way around this or am I just looking for miracles to happen? lol. I can laugh and joke about it most days but others I can't, It's the days where I don't recognise my hubby or know where I am is the worst.
Want To Talk But It's Hard.
- Thread starter Gee65xx
- Start date
Hello Gee65xx. Welcome to Talking Point. I do hope you will feel supported and heard here.
I have only lived with dementia through family members and can't begin to pretend I know how it is to actually experience it in myself. You have explained all the fears and frustrations I know my husband experienced and it`s amazing you are actually aware how your feelings change.
If you want to have time to yourself I would accept it as necessary. If you feel unable to socialise on certain days I would accept that too and just stay with people you know and trust and who understand how you are feeling.
It might be a cliche but `go with the flow` is a good base line to work with. You know how you feel and you are the best person to be able to decide what is best for you ar any given time. Do what suits you best. I`m sure your husband and those around you will understand.
I have only lived with dementia through family members and can't begin to pretend I know how it is to actually experience it in myself. You have explained all the fears and frustrations I know my husband experienced and it`s amazing you are actually aware how your feelings change.
If you want to have time to yourself I would accept it as necessary. If you feel unable to socialise on certain days I would accept that too and just stay with people you know and trust and who understand how you are feeling.
It might be a cliche but `go with the flow` is a good base line to work with. You know how you feel and you are the best person to be able to decide what is best for you ar any given time. Do what suits you best. I`m sure your husband and those around you will understand.
Hello @Gee65xx and welcome to the forum.
I'm sorry that things are not so good for you just now. I can only echo Sylvia's advice as I, like her, had connections to dementia through my family.
I wondered if you have talked about this with your husband. I know that's easy for me to say but if you haven't it might help you to sit down with him and explain that you need time to yourself. As Sylvia says I'm sure he will understand.
I'm glad you have found the forum and now that you have I hope you will continue to share here as I know you will get lots of understanding and support.
I'm sorry that things are not so good for you just now. I can only echo Sylvia's advice as I, like her, had connections to dementia through my family.
I wondered if you have talked about this with your husband. I know that's easy for me to say but if you haven't it might help you to sit down with him and explain that you need time to yourself. As Sylvia says I'm sure he will understand.
I'm glad you have found the forum and now that you have I hope you will continue to share here as I know you will get lots of understanding and support.
You suggest you want to talk to these people. My mum has dementia (diagnosed at 57)
When I could see my mum struggling to find her words I would say a scentence that we had agreed after a few occasions where mum had become overwhelmed.
"You may or may not know, mum has been diagnosed with dementia, sometimes meetings like this can be challenging for us, can you just give mum a moment to gather her thoughts". We had mixed reactions, one of her old colleagues thought we were joking and told her it was a cruel joke to play, an old school gate parent just walked away but most people were very understanding. Mum has always been very sociable and she wanted to talk, we just found honesty the best way.
When I could see my mum struggling to find her words I would say a scentence that we had agreed after a few occasions where mum had become overwhelmed.
"You may or may not know, mum has been diagnosed with dementia, sometimes meetings like this can be challenging for us, can you just give mum a moment to gather her thoughts". We had mixed reactions, one of her old colleagues thought we were joking and told her it was a cruel joke to play, an old school gate parent just walked away but most people were very understanding. Mum has always been very sociable and she wanted to talk, we just found honesty the best way.
Please try to stay with Talking Point. There will be a lot of support and understanding here for you @Gee65xx
Hi, I saw your post this morning and wanted to try and offer some support. At the moment I have experience of Alzheimer's from caring for my mum and whilst looking for anything to help me try and understand and work out how to help her I came across an amazing book by Wendy Mitchell called "Somebody I Used to Know". Wendy was diagnosed with early onset in 2014 when she was in her late fifties and working as a senior administrator in the NHS. Her book steers you through the challenges and the adaptations she has made to "outwit dementia" as she refers to it. Sad in parts but uplifting, positive and practical in so much. She no longer works but her mission of raising awareness of dementia is prolific. She is a member of so many research groups and travels extensively up and down the country. Not without massive amounts of planning beforehand. She records her daily exploits in her blog on Wordpress called "Which Me Am I Today", follow the this link. https://whichmeamitoday.wordpress.com/
I hope this is helpful to you, sending love, Julie
I have just finished reading this book and wish I had read it sooner. It is so illuminating, so amazing!
Hallo Gee65xx, just to say that I was diagnosed with Alzheimer's about three and a half years ago, and I can still do quite a lot of things. If I were you, I would try to stay as active as possible, and even take up a new interest. I know it is very hard to stop worrying, but you write very well, so I think your brain is still working! Best wishes, Martin
