You worked your tail off for this! What a monumental wealth of information. Thanks for featuring me. Do you do that with all new subscribers? It’s terrific and professionally phrased. I couldn’t be happier!!
Thank you, Judi. Yes, I hope every subscriber-contributor feels the same as you, I try to engage individually to ensure I'm appropriately representing their/your work ahead of publication. I appreciate how you're spending your precious energy and time to raise awareness of Dementia symptoms. We are privileged to be invited into your & Jenny's journey.
I was just talking to a friend in an impossible situation with her {dementia} mother. Funds are state specific she's finding and all of it is a confusing overwhelming mess. Thanks for your resources.
Thanks, Trevy. You're welcome This is why I do what I do!
Have a look at the 'articles with resources' section. MANY authors have shared their experiences and recommended organisations. I've learnt that there are organisations who can help 'navigate' the search and system.
What a wonderful resource you’ve given us…I appreciate the mention, Victoria, and grateful to find so many other sites supporting and advocating for brain diseases. I’ve also just discovered Marji Stewart. She
Writes about the Gray Mist as she deals with Alzheimer’s diagnosis. Your readers may find it interesting how high functioning sge is! A whole new world has opened for me as I prepare to help my community! Thank you so much for this! Much love to you! ☺️💕🤗.
Thank you for putting all these resources together - I’m sure it’ll be immensely helpful to others who are dealing with this very challenging condition.
Exactly, Sam! We don't know what we don't know until we're on the cusp of needing to know. At that point, the tsunami of information is overwhelming and like an impossible maze to navigate. I hope this can facilitate easier access to diverse ideas and tips.
100%, and grief can quickly kick in alongside decision fatigue/paralysis and adrenaline making it super hard to process new information when facing a new diagnosis. Better that this is all in public conscious awareness so we can all make informed decisions as and when necessary.
Absolutely! I am an autistic parent carer to autistic children, so I am involved in carer advocacy every day here in Aotearoa New Zealand. I also had to make a last minute decision with my family recently to have a DNR for a relative. You never know when you are confronted with such issues and decisions. Denial gets us nowhere, I think this all needs normalising as it is just part of life. I cannot tolerate toxic positivity where people cannot engage with these discussions. Being autistic really helps, I like to bust social taboos ha ha! It is important and necessary work, and I commend you and your team for raising awareness on this vital topic.
Aww Sam sending hugs (if those are ok with you). Carer advocacy — yay! Doubly grateful to have you hear.
Yes, DNRs are tricky discussions—depressing and grief swallows everyone suddenly.
Ohh no team here hon. Just 'lil ole me with a lot of content I'm repurposing from years of journals and saving info, and connecting with MANY others who like you and me are passionate about caregiving/carers or are receiving care. Hence why I'm grateful for strong connections and mutual work-support to raise awareness together.
Thank you for inclusion in this list and for the valuable resource you so freely offer. One of the hardest things was sifting through all the information and trying to figure out what was what when I first started this journey. I'm a list maker by nature, I don't know how anyone who isn't manages to make it through with any semblance of sanity. What you do is an enormous help.
Awwwww Thanks, Jodi, that means a lot coming from you! I'm really hoping that this can become a soft, safe place to land for anyone's questions and to offer support! E.g. mashing up prunes to help someone poop! Real-life needs support when we don't know what we don't know, and like you said the tsunami of leaflets is overwhelming!
I'm hoping that I cans grow the articles into phases for easier navigation. Plus there are other separate anthologies coming ;-) Big brain and ideas that need to be realised here!
Victoria, what a gift you offer by compiling and sharing these resources and connections! I'm honored that you included my piece in the mix. ♥️ to all on this journey
What an important, comprehensive resource you have created for people walking this journey! Thanks for your passion and dedication to supporting carers!
Thanks Christine! This is the first of several ;-) Each will evolve as the Anthologies grow. xo Now you’re more familiar with my curious-energetic brain you won’t be surprised at how ideas keep growing! I'd welcome your perspective, I'm sure you've walked this journey with several people. xo
Great article and could only have been written by someone who has been through it themselves with regard to caring. I am convinced that my husband has Frontotemporal Dementia but getting a diagnosis when he is so medically none compliant is a nightmare frankly. Friends ask how I will cope when he goes - he is 23 years older than I, but I feel I lost the many I married years ago. It is a very lonely life trying to care for someone with dementia.
Thank you for sharing Helena. Have a read of Jessica Smith's articles. I'm so sorry that your husband lacks the self -awareness of his behaviour and condition. From what I understand it's a common situation for other caregivers. You're not alone, when you're here. Sending big hugs.
Hi Victoria, what a great open supportive space this will be. My father is currently end of life care with a dual diagnosis of Alzheimer’s and fronto-temporal dementia. It’s so hard to watch. What helps me in my “living grief” is writing poetry. Just yesterday I have set up my Amazon KDP account to self publish my poems in grief in the hope to raise funds for research. I’ve taken part in remote research for the last year. Every little helps.
Here is one poem to help any readers in grief today -
Thank you so much, Beverley. Everyone in the Carer Mentor community is with you. xoxo
Heartaching - a dual diagnosis. I remember every piece of EOL care.
Beautiful poem and so true.
I've subscribed to your Substack. You could always make a separate section or grouping on your Substack for 'Early grief'. Take a look at Jodi's ' A Long Goodbye' publication. I know KDP and considered it a while ago. Substack is SO much easier. There are a few folks here who could help you with that if you'd like? Let us know. Sending warm hugs!
Ohhh Debbie, darn I missed you on the directory! Which 2 articles would you recommend? The cake one is good 'caregiver dilemma' one? one about the realities of dementia? Can't believe I missed you! Apologies!
You worked your tail off for this! What a monumental wealth of information. Thanks for featuring me. Do you do that with all new subscribers? It’s terrific and professionally phrased. I couldn’t be happier!!
Thank you, Judi. Yes, I hope every subscriber-contributor feels the same as you, I try to engage individually to ensure I'm appropriately representing their/your work ahead of publication. I appreciate how you're spending your precious energy and time to raise awareness of Dementia symptoms. We are privileged to be invited into your & Jenny's journey.
Oh thank you very much. I talked to Jenny last nite and she said she’d be glad to participate in the collaborative.
What a valuable contribution to those of us with loved ones with dementia; thank you for compiling this, Victoria.
Thanks, Amy - I hope your back is healing. Hugs and best wishes.
I was just talking to a friend in an impossible situation with her {dementia} mother. Funds are state specific she's finding and all of it is a confusing overwhelming mess. Thanks for your resources.
Thanks, Trevy. You're welcome This is why I do what I do!
Have a look at the 'articles with resources' section. MANY authors have shared their experiences and recommended organisations. I've learnt that there are organisations who can help 'navigate' the search and system.
I absolutely will!
What a wonderful resource you’ve given us…I appreciate the mention, Victoria, and grateful to find so many other sites supporting and advocating for brain diseases. I’ve also just discovered Marji Stewart. She
Writes about the Gray Mist as she deals with Alzheimer’s diagnosis. Your readers may find it interesting how high functioning sge is! A whole new world has opened for me as I prepare to help my community! Thank you so much for this! Much love to you! ☺️💕🤗.
Thanks, Joan. You’re very welcome. I’ll explore Marji Stewart’s work now. thanks.
Thanks for sharing!
Thanks for writing and sharing your thoughts, Pam!
Thank you for the endorsement and support🙏
What an incredible wealth of information. Thank you for putting this all together, Victoria!
Thank you for putting all these resources together - I’m sure it’ll be immensely helpful to others who are dealing with this very challenging condition.
This is a great directory, thanks for compiling it. It’s available to many people who are not yet aware they will become carers in their future.
Exactly, Sam! We don't know what we don't know until we're on the cusp of needing to know. At that point, the tsunami of information is overwhelming and like an impossible maze to navigate. I hope this can facilitate easier access to diverse ideas and tips.
100%, and grief can quickly kick in alongside decision fatigue/paralysis and adrenaline making it super hard to process new information when facing a new diagnosis. Better that this is all in public conscious awareness so we can all make informed decisions as and when necessary.
Yes!! Really well said, Sam! Deer in headlights or drowning in the dark. Thanks for being here and sharing. You get it!
Absolutely! I am an autistic parent carer to autistic children, so I am involved in carer advocacy every day here in Aotearoa New Zealand. I also had to make a last minute decision with my family recently to have a DNR for a relative. You never know when you are confronted with such issues and decisions. Denial gets us nowhere, I think this all needs normalising as it is just part of life. I cannot tolerate toxic positivity where people cannot engage with these discussions. Being autistic really helps, I like to bust social taboos ha ha! It is important and necessary work, and I commend you and your team for raising awareness on this vital topic.
Aww Sam sending hugs (if those are ok with you). Carer advocacy — yay! Doubly grateful to have you hear.
Yes, DNRs are tricky discussions—depressing and grief swallows everyone suddenly.
Ohh no team here hon. Just 'lil ole me with a lot of content I'm repurposing from years of journals and saving info, and connecting with MANY others who like you and me are passionate about caregiving/carers or are receiving care. Hence why I'm grateful for strong connections and mutual work-support to raise awareness together.
Oh you are doing an incredible job, Victoria! Thank you 💐
Thank you for inclusion in this list and for the valuable resource you so freely offer. One of the hardest things was sifting through all the information and trying to figure out what was what when I first started this journey. I'm a list maker by nature, I don't know how anyone who isn't manages to make it through with any semblance of sanity. What you do is an enormous help.
Awwwww Thanks, Jodi, that means a lot coming from you! I'm really hoping that this can become a soft, safe place to land for anyone's questions and to offer support! E.g. mashing up prunes to help someone poop! Real-life needs support when we don't know what we don't know, and like you said the tsunami of leaflets is overwhelming!
I'm hoping that I cans grow the articles into phases for easier navigation. Plus there are other separate anthologies coming ;-) Big brain and ideas that need to be realised here!
Victoria, what a gift you offer by compiling and sharing these resources and connections! I'm honored that you included my piece in the mix. ♥️ to all on this journey
Thanks, Sarah! I hope that readers will return and ask us any questions so we help each other.
This is amazing! Thankful for this resource and everyone who shares their stories and hearts.
I will dive in and digest ❤️
Thanks, and you're welcome! This is the Carer Mentor's purpose and mission in action! I thought of you when I was reading Jessica Smith's articles
Will definitely read those!
What an important, comprehensive resource you have created for people walking this journey! Thanks for your passion and dedication to supporting carers!
Thanks Christine! This is the first of several ;-) Each will evolve as the Anthologies grow. xo Now you’re more familiar with my curious-energetic brain you won’t be surprised at how ideas keep growing! I'd welcome your perspective, I'm sure you've walked this journey with several people. xo
Great article and could only have been written by someone who has been through it themselves with regard to caring. I am convinced that my husband has Frontotemporal Dementia but getting a diagnosis when he is so medically none compliant is a nightmare frankly. Friends ask how I will cope when he goes - he is 23 years older than I, but I feel I lost the many I married years ago. It is a very lonely life trying to care for someone with dementia.
Thank you for sharing Helena. Have a read of Jessica Smith's articles. I'm so sorry that your husband lacks the self -awareness of his behaviour and condition. From what I understand it's a common situation for other caregivers. You're not alone, when you're here. Sending big hugs.
Hi Victoria, what a great open supportive space this will be. My father is currently end of life care with a dual diagnosis of Alzheimer’s and fronto-temporal dementia. It’s so hard to watch. What helps me in my “living grief” is writing poetry. Just yesterday I have set up my Amazon KDP account to self publish my poems in grief in the hope to raise funds for research. I’ve taken part in remote research for the last year. Every little helps.
Here is one poem to help any readers in grief today -
Ebbs and
Flows: grief comes and
Goes. See, you’re here, yet gone.
Fragile, yet funny; frail, yet strong:
Your smile.
Thank you Victoria, I will do some research, and thank you for your kind words of support 💛
Thank you so much, Beverley. Everyone in the Carer Mentor community is with you. xoxo
Heartaching - a dual diagnosis. I remember every piece of EOL care.
Beautiful poem and so true.
I've subscribed to your Substack. You could always make a separate section or grouping on your Substack for 'Early grief'. Take a look at Jodi's ' A Long Goodbye' publication. I know KDP and considered it a while ago. Substack is SO much easier. There are a few folks here who could help you with that if you'd like? Let us know. Sending warm hugs!
Wow, this is huge. Thank you.
Ohhh Debbie, darn I missed you on the directory! Which 2 articles would you recommend? The cake one is good 'caregiver dilemma' one? one about the realities of dementia? Can't believe I missed you! Apologies!
Oh no not all! Don't feel bad! I'm so impressed at the huge list you already have!!
If you wanted to include "Let the eat cake" , that would be a good one. I can't even think what other "dementia specific" posts I've shared... 🤦😂
Thanks! I'll look through my list of saved articles. ;-)
Sorry, here's the link
https://open.substack.com/pub/behindshojidoors/p/let-them-eat-cake?utm_source=share&utm_medium=android&r=2q4rv0
Oh don't worry I'd saved the link ;-) I'm having a roam around your publication again to find another xo