I’m inspired by your support of each other and for the Carer Mentor mission.
This is a discussion thread. You can share a question, and anyone can respond.
Premise: Carer Mentor articles can offer some insights, but the power of this community is in its ability to share, network and support each other with and without me.
COMMUNITY QUESTIONS
In your comment, type if you are a CAREGIVER or STARTING/MAY START SOON to care for someone
Post a question or a tip/insight with a brief subject title in CAPS
CAREGIVING, e.g. daily care routine, emergencies, nighttime routine, diet/food, communication, tracking medications, what do I do when.
BEING A CARER, e.g. identity/loss of identity/sustaining your identity, the label, relationships, connection/disconnection, well-being/emotions, sleep/lack of sleep, communication
OTHER…
Please offer an idea, empathetic support, or recommendation to someone
REMEMBER:
We each have our unique situation.
Let’s not overwhelm each other. Let’s share our empathy to meet someone where THEY are.
There is no right or wrong; we’re each doing our best.
We don’t know what we don’t know—feel free to ask a general question based on the Carer Mentor content, and I/community members will do our best to respond.
Please note any reference to medical conditions or treatments is based on personal experience and cannot be taken as expert/certified medical advice. Thanks.
Do you have a daily medication 'tracking sheet' that you use to make sure pills get ticked off? We have one so that we can both see the different pills are taken.
Do you write a summary paper of medical history, allergies and current medication that you give medical staff?
What other things do you do/use to prime yourself for an emergency or another medical appointment?
I'm a CAREGIVER. I have a copy of my mom's meds and allergies on my phone. I also keep a google drive file that has tabs with all her doctors and the details of each visit. Date, Details, Actions to be taken, next appointment.
In another file I have a list of all her doctors, addresses and phone numbers, plus copies of all needed documentation.
My mother still handles her own medication but my sister helps her refill for two weeks
I’m happy to share a mock up of my excel sheet! And our names are spelled the same way! love it! I also teaching journaling and part of it is organizing a notebook to write notes about appointments, feelings, boundaries, pausing to take a deep breath and having an index to keep it straight!
Janine, if you do a post you could do a downloadable format via Dropbox. I can cross-post or just link to your post so that other Carer Mentor community members can use it too? Let me know your preference and how you'd like to do things.
I'll write the post and will either send a link to a downloadable google excel form or can do Dropbox, which I don't use but let me know your thoughts!
You do whatever is easiest for you. ;-) Just let me know when you've published so I can link to the post - If you could possibly mention Carer Mentor and our community, I'd appreciate it.❤️
Ohhhh you're so badass you have an action file! I have a calendar and update the medical history excel each visit! Yep I've a contact list too.
Ohhh others can get ideas on what to track via this Q&A now - how cool!
I think you, me & Helena are demonstrating how caregivers prime, prepare and are excellent project managers - because we HAVE to be ready 'just in case'.
Thanks for sharing, Janine! Much appreciated. If you write an article/share the file on your publication let me know! ;-)
Love all the sharing of ideas! There's so much going on, it's very difficult to remember the details. I also print a copy of the doctor visits and put them in a binder so my mom can reread everything.
I think project manager can be placed on our resumés!
Yes!! Thanks, Janine. Yep we have a blue-lever-arch folder with a clear pocket for 'New appointment' letters and then reported consultations...
Unfortunately for Dad, there were hit and miss, random letters or not, and no 'appointments' as such because in palliative/end of life we were dealing with emergencies almost weekly ...not monitoring, treating and planned interventions.
Project Management Elites or a special 'Caregiver-elite-force' of project managers!!
There's a Fire in my belly from everything I experienced, we need to help each other prepare, enable, empower, inspire..not just mindfully but VERY practically too! Thank you for your contributions and support. Together we'll support each other, and others ;-)
I have an up to date list of medications on the computer so when the ambulance staff came, I could print it out. I update it when medication is changed.
I do have a list of pills to be taken but my husband is so medically non compliant it is not easy to make him comply!
I did go through a stage where I had a bag for husband with spare underwear/pads. I also make sure there is an unopened bath robe easily available if he did have to go into hospital as an emergency. I also keep some cash in the house as I am very against him taking credit cards into hospital but he always wants money for taxi home and would not go into hospital without this.
I hear you, Janine. Sending a hug - if you're ok with hugs! I hope you have some support and at least a little planned time to have space & fresh air?
With Dad, I felt like I was his constant reference point - his anchor in time and space when he had none. So, yes, repetition, and repetition. Also, at night announcing the plans for the next day a few times and what we'd need to do in the morning...
My Ken has mostly lost his executive function in a swift way. So I have the morning and night lists so he can follow steps to keep him engaged in our routines. But still I constantly need to remind him of every single one. It took me a long time to accept he was going down a 45 degree slope from which he wouldn't recover.
Thanks for sharing, Janine. I'm trying to imagine the constant adaptations and agility you need to do in your situation...for us, it wasn't a slope but steps, where the step-downs became deeper and the plateaus shorter, before a very steep drop. Sitting in empathy alongside you. Side-hugs.
Of course I'm ok with hugs 🥰. Yes I do have some support. Yesterday was one of the sad, hopeless days. The weather didn't help. The sky was as dark, stormy as I felt. Spent the afternoon writing my latest post.
CAREGIVER. Mom‘s medical history is on a Google Drive spreadsheet, so I can access it anyplace. It’s color-coded for surgeries, medication’s. There’s a column for doctors names, hospital affliations, notes, results, dates, medications added as well as one with a formula that automatically calculates her age at the time of the event/appt. I also have all her important documents in an online safe: living will, POA, Medicare card and so on. Everything’s accessible from my phone. It got to the point with doctor stuff, that rather than looking at her chart they just asked me for the information, because I had complete information from every doctor right in front of me.
I’ve duplicated that system for myself as I’ve aged. I'm kind of a geek like that.
Ooo When you say 'online safe' can you share more details, Jodi? Where, what how to access?
I hear you - in our hospital (that still relied on hardcopy files ....don't get me started) the 3 -4 inch files couldn't help in a consult...Hence the 'cheat sheet' and like you, a history of info
We are totally underestimated in being the 'short-hand' info access for the healthcare system!
I am a veteran of the battle against the end of life ideas we surrender to because the avoidance of anything about death or nursing homes, fearing the worst, yet refusing to resist the "inevitable"..end. My controversial ideas and unpopular advice have become my validation. You can live your life to whatever you have the courage to fight for...if you are not sure what that looks like. I can help you see a different picture of what it could be..if you let the fear become a mere passenger on the grande finally of your unique life story. Tell your story the way you want it to be told...or leave it to others who could not see through your one-of-a-kind view. I learned the hard way that I cannot fix anyone esp myself but I can be a beautiful or irritating distraction to give you a space to focus on something less stressful if only for a little while...and just because you are dying..dies not mean you get to be an asshat..unless you want to go there in smackdown of mind over matter endless affirmations and sad displays of poor me scenarios that is your choice along with my singing your fav songs so badly you have to surrender to positivity...or act like it..lol..you will not be unchanged by the time I leave you..promise or threat it's your move...
Oh jeepers, what I wouldn't give for a full night's sleep. Recently I took four nights to myself up in Woodstock, and the priority there was a bath. With one bathroom and three adults (me, mom, and an aide) I hadn't been able to soak in a tub for six years. I also miss spontaneity.
I'll start. 🩷
I'm a CAREGIVER. I have a CAREGIVING question:
Do you have a daily medication 'tracking sheet' that you use to make sure pills get ticked off? We have one so that we can both see the different pills are taken.
Do you write a summary paper of medical history, allergies and current medication that you give medical staff?
What other things do you do/use to prime yourself for an emergency or another medical appointment?
Great questions.
I'm a CAREGIVER. I have a copy of my mom's meds and allergies on my phone. I also keep a google drive file that has tabs with all her doctors and the details of each visit. Date, Details, Actions to be taken, next appointment.
In another file I have a list of all her doctors, addresses and phone numbers, plus copies of all needed documentation.
My mother still handles her own medication but my sister helps her refill for two weeks
Can I hire you to do my Ken's? From one Janine to the other?
I’m happy to share a mock up of my excel sheet! And our names are spelled the same way! love it! I also teaching journaling and part of it is organizing a notebook to write notes about appointments, feelings, boundaries, pausing to take a deep breath and having an index to keep it straight!
You’ve inspired me to do a post on that!
Janine, if you do a post you could do a downloadable format via Dropbox. I can cross-post or just link to your post so that other Carer Mentor community members can use it too? Let me know your preference and how you'd like to do things.
I'll write the post and will either send a link to a downloadable google excel form or can do Dropbox, which I don't use but let me know your thoughts!
You do whatever is easiest for you. ;-) Just let me know when you've published so I can link to the post - If you could possibly mention Carer Mentor and our community, I'd appreciate it.❤️
YAY!
Yes not the usual spelling. I love our name 🎈🎈🎈
Yes please. I don't know how to use excel but my grandson can help me if you do send me the mock🙏🏻✨🩷
lavici5@icloud.com. Thank you so much🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Ohhhh you're so badass you have an action file! I have a calendar and update the medical history excel each visit! Yep I've a contact list too.
Ohhh others can get ideas on what to track via this Q&A now - how cool!
I think you, me & Helena are demonstrating how caregivers prime, prepare and are excellent project managers - because we HAVE to be ready 'just in case'.
Thanks for sharing, Janine! Much appreciated. If you write an article/share the file on your publication let me know! ;-)
Love all the sharing of ideas! There's so much going on, it's very difficult to remember the details. I also print a copy of the doctor visits and put them in a binder so my mom can reread everything.
I think project manager can be placed on our resumés!
Will definitely share if I write something on it.
Yes!! Thanks, Janine. Yep we have a blue-lever-arch folder with a clear pocket for 'New appointment' letters and then reported consultations...
Unfortunately for Dad, there were hit and miss, random letters or not, and no 'appointments' as such because in palliative/end of life we were dealing with emergencies almost weekly ...not monitoring, treating and planned interventions.
Project Management Elites or a special 'Caregiver-elite-force' of project managers!!
Amazing that you're sharing all this information and holding space for those in similar situations. Thank you!
There's a Fire in my belly from everything I experienced, we need to help each other prepare, enable, empower, inspire..not just mindfully but VERY practically too! Thank you for your contributions and support. Together we'll support each other, and others ;-)
I have an up to date list of medications on the computer so when the ambulance staff came, I could print it out. I update it when medication is changed.
I do have a list of pills to be taken but my husband is so medically non compliant it is not easy to make him comply!
I did go through a stage where I had a bag for husband with spare underwear/pads. I also make sure there is an unopened bath robe easily available if he did have to go into hospital as an emergency. I also keep some cash in the house as I am very against him taking credit cards into hospital but he always wants money for taxi home and would not go into hospital without this.
Thanks for your comments Helena! Great tips and thoughts for others!
I miss our times together, my freedom...not having to repeat myself ad infinitum all day everyday
I hear you, Janine. Sending a hug - if you're ok with hugs! I hope you have some support and at least a little planned time to have space & fresh air?
With Dad, I felt like I was his constant reference point - his anchor in time and space when he had none. So, yes, repetition, and repetition. Also, at night announcing the plans for the next day a few times and what we'd need to do in the morning...
My Ken has mostly lost his executive function in a swift way. So I have the morning and night lists so he can follow steps to keep him engaged in our routines. But still I constantly need to remind him of every single one. It took me a long time to accept he was going down a 45 degree slope from which he wouldn't recover.
Thanks for sharing, Janine. I'm trying to imagine the constant adaptations and agility you need to do in your situation...for us, it wasn't a slope but steps, where the step-downs became deeper and the plateaus shorter, before a very steep drop. Sitting in empathy alongside you. Side-hugs.
Of course I'm ok with hugs 🥰. Yes I do have some support. Yesterday was one of the sad, hopeless days. The weather didn't help. The sky was as dark, stormy as I felt. Spent the afternoon writing my latest post.
It came out nicely and kind of funny. Thank you🙏🏻
A VERY big hug, then ;-) I hear you.
Journalling, writing has always been my balm in all the discombobulation.
I don't see your publication - where could I read your post? Take care xo
Especially this one https://open.substack.com/pub/janinevicicampbell/p/01-words-as-a-buoy?r=ez84n&utm_medium=ios
Just sent you the link. I hope you like it and if so please share it? 🙏🏻
https://janinevicicampbell.substack.com/p/08-for-looking-pretty-pa-viendome?utm_medium=ios
CAREGIVER. Mom‘s medical history is on a Google Drive spreadsheet, so I can access it anyplace. It’s color-coded for surgeries, medication’s. There’s a column for doctors names, hospital affliations, notes, results, dates, medications added as well as one with a formula that automatically calculates her age at the time of the event/appt. I also have all her important documents in an online safe: living will, POA, Medicare card and so on. Everything’s accessible from my phone. It got to the point with doctor stuff, that rather than looking at her chart they just asked me for the information, because I had complete information from every doctor right in front of me.
I’ve duplicated that system for myself as I’ve aged. I'm kind of a geek like that.
Ooo When you say 'online safe' can you share more details, Jodi? Where, what how to access?
I hear you - in our hospital (that still relied on hardcopy files ....don't get me started) the 3 -4 inch files couldn't help in a consult...Hence the 'cheat sheet' and like you, a history of info
We are totally underestimated in being the 'short-hand' info access for the healthcare system!
FidSafe. It’s free, from Fidelity. I have everything in there. Copies of all legal docs, credit cards, etc. sooo helpful. And did I mention free?
https://www.fidsafe.com/
This is great! Thank you for sharing that link!
Thanks for sharing, Jodi! Good tip for others! Thanks!!!
I am a veteran of the battle against the end of life ideas we surrender to because the avoidance of anything about death or nursing homes, fearing the worst, yet refusing to resist the "inevitable"..end. My controversial ideas and unpopular advice have become my validation. You can live your life to whatever you have the courage to fight for...if you are not sure what that looks like. I can help you see a different picture of what it could be..if you let the fear become a mere passenger on the grande finally of your unique life story. Tell your story the way you want it to be told...or leave it to others who could not see through your one-of-a-kind view. I learned the hard way that I cannot fix anyone esp myself but I can be a beautiful or irritating distraction to give you a space to focus on something less stressful if only for a little while...and just because you are dying..dies not mean you get to be an asshat..unless you want to go there in smackdown of mind over matter endless affirmations and sad displays of poor me scenarios that is your choice along with my singing your fav songs so badly you have to surrender to positivity...or act like it..lol..you will not be unchanged by the time I leave you..promise or threat it's your move...
I hear you - I'm not sure I understood all the elements of what you wrote.
I tend to lean towards an 'Each to their own' as any caregiving for the more frail or older loved ones can be emotionally fraught.
I just went over to read your article Sure. I'm copying it here for others to read: https://open.substack.com/pub/sureturner/p/copy-copy-the-calling?r=a9y7d&utm_campaign=post&utm_medium=web
Thank you for what you do to help others with Alzheimers or Dementia.
I'm a CAREGIVER. I have a 'BEING A CARER' question -
Thinking back to before - when you weren't a carer, what is the one thing you miss now, being a carer
My answer in the context of the fraught, stressful situation of caring for my father: Deep, restful, long sleep
Oh jeepers, what I wouldn't give for a full night's sleep. Recently I took four nights to myself up in Woodstock, and the priority there was a bath. With one bathroom and three adults (me, mom, and an aide) I hadn't been able to soak in a tub for six years. I also miss spontaneity.
Ahhh yes spontaneity....no words needed