Victoria, I really appreciate the insights you provide on your Substack. Even though we live in different countries, your advice has smoothed the sails of my often tumultuous journey caring for my mom.
We are indeed in a caregiver healthcare crisis as we navigate how to care for ourselves, children if we have them, careers, and parents.
One tip I will share as my mom was once again in the hospital is signing up for a patient portal. I received results sometimes even before the doctors. It gave me reassurance and updates on her care when I wasn't able to be there.
PS. Your suggestion of having an emergency bag, which I also use on the back of her wheelchair kept me calmer in an emergency situation.
Janine, I'm SO glad the information and ideas on Carer Mentor could be of such service to you THIS is why I do, what I do. 1 person, big vision, burning conviction to help other caregivers!
If you have the time and opportunity it would be great to hear more about the 'Patient Portal' We don't have that rapid access to our own info, tests, consults and interpreted reports here in the UK. I'm usually the one keep key physicians aware of updates. WE'D NEVER receive results before doctors..the Multidisciplinary team has to 'discuss and decide' first before WE see anything.
I'm glad to hear the go-bag idea helped!
I really appreciate your feedback, this helps others in our community. best wishes
Just stumbled upon your substack and I can't believe it's taken me this long for the algorithm to lead me to you! I'm a hospital chaplain and work with a lot of caregivers as well as teach clergy how to do the work of professional spiritual caregiving. Looking forward to reading through your archive and gleaning your wisfom. Thanks for such a valuable resource!
Hi Christine - I'm so pleased you've found me. Via Carer Mentor you'll find lots of others too. If you go to the Caregivers library on the homepage, each of the four 'tables of contents' is a compilation of my articles and other authors around Substack...everything is freely available, and I've integrated & cross-linked old articles from the archive for easy access..I'm still in the process of linking articles from other authors - LOTS of gems ;-)
I hope you & the caregivers you're linked to can find something of use that will serve you/them on the caregiver journey.
Victoria, I just today realized I hadn't recommended Carer Mentor on my stack. What an oversight!! Anyway, it's there now. Thank you for all you do and share ♥️
I’m delighted to find your site, Victoria! Our town is a dementia friendly community…. As a board member I was trained… now onto businesses etc. We just memory cafes each week at my senior center. It’s the sweetest thing to see caregivers having a break… chatting with others, feeling their relief and joy. Same with our Parkinson’s classes… caregivers have time for themselves and gather for coffee etc. I’m on the board and love we are leading the way for our state!
Joan, Thank you SO much for subscribing. I'm so pleased to welcome you into the network- community of Carer Mentor
Big heart-swell for everything you've described. FYI, Here in the UK, May 13-19th is Dementia Awareness Week; perhaps you can share more about your dementia-friendly community during that week?
Also, if you haven't already connected to her, you may enjoy @Jody Day's publication
What an amazing resource and community you've built here already, Victoria.
I cared for my mom both in our home and in a nearby condo, until she finally needed round-the-clock care, which my wife and I couldn't manage any longer. Though she and my dad are both gone now (dementia x 2), I'm finding that recovering from the long period of seeing them through their declines and the ensuing grief when it was over, all needs ongoing care, consideration, and patience. It's such a relief to find a resource like this, which I'll undoubtedly be digging into—all these wonderful roundups and think pieces. So glad to have found your work. Thank you for doing what you do. 🙏
Thanks to YOU Rob. This is the feedback that completes my daily goal of helping 1 person a day, here on the website or on other carers/caregiver forums online.
I hear you, and right there with you given some of the traumatic moments that punctuated our long period of caring for Dad, through to his passing. I'm blessed that the tempo and care-routine is much easier now with Mum than it was with Dad.
It's rewarding to hear that the information and resources can support you. As you've read, my mission is a fire-in-my-belly conviction that I know is shared by many caregivers. I'm grateful for the opportunities I've had during my career and feel the need to share what I know. FYI I've a huge knowledge database that I've curated so if you're ever looking for a resource, DM me! Thanks, Rob! You made my day!
P.S Please could you share the website with anyone who you think needs empathy and inspiration - especially as a caregiver! I can't host live chats or online services etc, BUT I can facilitate networking, and provide a Hub and portal to others/experts. THIS is what I've found is easiest & fosters connectivity for us , caregivers,
You are an amazing woman and I just wanted you to know that. After my childless aunt became a widow, I moved in with her just to help with the isolation. My role as simple as it was had an impact on my schedule so I can't imagine what full-time caregivers would think. Thank you very much for your efforts and spreading awareness.
Bless you for that. Thank you!! I'm sure your caregiving & role as a carer was anything BUT simple. You were/are a carer.
I made a very conscious choice for the love of my parents to resign from work and care for them, many people sleepwalk into caring and don't have the luxury of making a choice like you and I have.
I started my own very small company to keep my brain cells dancing. The company and setting up the first website in 2020 fuelled my conviction that this is exactly what I'm meant to be doing. Hence, for me, changing the narrative, supporting & advocating for caregivers is a mission. Thanks for subscribing & being part of this journey.
Victoria, I really appreciate the insights you provide on your Substack. Even though we live in different countries, your advice has smoothed the sails of my often tumultuous journey caring for my mom.
We are indeed in a caregiver healthcare crisis as we navigate how to care for ourselves, children if we have them, careers, and parents.
One tip I will share as my mom was once again in the hospital is signing up for a patient portal. I received results sometimes even before the doctors. It gave me reassurance and updates on her care when I wasn't able to be there.
PS. Your suggestion of having an emergency bag, which I also use on the back of her wheelchair kept me calmer in an emergency situation.
Thank you!🌻
Janine, I'm SO glad the information and ideas on Carer Mentor could be of such service to you THIS is why I do, what I do. 1 person, big vision, burning conviction to help other caregivers!
If you have the time and opportunity it would be great to hear more about the 'Patient Portal' We don't have that rapid access to our own info, tests, consults and interpreted reports here in the UK. I'm usually the one keep key physicians aware of updates. WE'D NEVER receive results before doctors..the Multidisciplinary team has to 'discuss and decide' first before WE see anything.
I'm glad to hear the go-bag idea helped!
I really appreciate your feedback, this helps others in our community. best wishes
Glad we met over on Smallstack Victoria. This is great work you are doing here. I look forward to receiving your posts now I’ve subscribed! 💖
Thank you for reading and your subscription, Jane! Your support and connection are much appreciated
Victoria, what you are doing is so important. Thank you for all you do for the caregivers' community.
Thank you Amy. Big hugs
Just stumbled upon your substack and I can't believe it's taken me this long for the algorithm to lead me to you! I'm a hospital chaplain and work with a lot of caregivers as well as teach clergy how to do the work of professional spiritual caregiving. Looking forward to reading through your archive and gleaning your wisfom. Thanks for such a valuable resource!
Hi Christine - I'm so pleased you've found me. Via Carer Mentor you'll find lots of others too. If you go to the Caregivers library on the homepage, each of the four 'tables of contents' is a compilation of my articles and other authors around Substack...everything is freely available, and I've integrated & cross-linked old articles from the archive for easy access..I'm still in the process of linking articles from other authors - LOTS of gems ;-)
I hope you & the caregivers you're linked to can find something of use that will serve you/them on the caregiver journey.
Victoria, I just today realized I hadn't recommended Carer Mentor on my stack. What an oversight!! Anyway, it's there now. Thank you for all you do and share ♥️
Hi Sarah, Thank you! I appreciate all your support on this journey! xo
I’m delighted to find your site, Victoria! Our town is a dementia friendly community…. As a board member I was trained… now onto businesses etc. We just memory cafes each week at my senior center. It’s the sweetest thing to see caregivers having a break… chatting with others, feeling their relief and joy. Same with our Parkinson’s classes… caregivers have time for themselves and gather for coffee etc. I’m on the board and love we are leading the way for our state!
Joan, Thank you SO much for subscribing. I'm so pleased to welcome you into the network- community of Carer Mentor
Big heart-swell for everything you've described. FYI, Here in the UK, May 13-19th is Dementia Awareness Week; perhaps you can share more about your dementia-friendly community during that week?
Also, if you haven't already connected to her, you may enjoy @Jody Day's publication
Thank you Joan!
What an amazing resource and community you've built here already, Victoria.
I cared for my mom both in our home and in a nearby condo, until she finally needed round-the-clock care, which my wife and I couldn't manage any longer. Though she and my dad are both gone now (dementia x 2), I'm finding that recovering from the long period of seeing them through their declines and the ensuing grief when it was over, all needs ongoing care, consideration, and patience. It's such a relief to find a resource like this, which I'll undoubtedly be digging into—all these wonderful roundups and think pieces. So glad to have found your work. Thank you for doing what you do. 🙏
Thanks to YOU Rob. This is the feedback that completes my daily goal of helping 1 person a day, here on the website or on other carers/caregiver forums online.
I hear you, and right there with you given some of the traumatic moments that punctuated our long period of caring for Dad, through to his passing. I'm blessed that the tempo and care-routine is much easier now with Mum than it was with Dad.
It's rewarding to hear that the information and resources can support you. As you've read, my mission is a fire-in-my-belly conviction that I know is shared by many caregivers. I'm grateful for the opportunities I've had during my career and feel the need to share what I know. FYI I've a huge knowledge database that I've curated so if you're ever looking for a resource, DM me! Thanks, Rob! You made my day!
P.S Please could you share the website with anyone who you think needs empathy and inspiration - especially as a caregiver! I can't host live chats or online services etc, BUT I can facilitate networking, and provide a Hub and portal to others/experts. THIS is what I've found is easiest & fosters connectivity for us , caregivers,
You are an amazing woman and I just wanted you to know that. After my childless aunt became a widow, I moved in with her just to help with the isolation. My role as simple as it was had an impact on my schedule so I can't imagine what full-time caregivers would think. Thank you very much for your efforts and spreading awareness.
Bless you for that. Thank you!! I'm sure your caregiving & role as a carer was anything BUT simple. You were/are a carer.
I made a very conscious choice for the love of my parents to resign from work and care for them, many people sleepwalk into caring and don't have the luxury of making a choice like you and I have.
I started my own very small company to keep my brain cells dancing. The company and setting up the first website in 2020 fuelled my conviction that this is exactly what I'm meant to be doing. Hence, for me, changing the narrative, supporting & advocating for caregivers is a mission. Thanks for subscribing & being part of this journey.
Thank you for your kind words Victoria! It's an honour to be on this journey and to sail with other caregivers as well.
I look forward to following you, Victoria! I’m a hospice massage therapist and writer and always interested in topics related to caregiving.
Thanks, Addie. I'm following you now. I can very easily imagine how much comfort and care you offer in the hospice. Thank you for what you do.
Thank you, Victoria. It’s amazing work and I feel honored I get to do it.