Surprises in Caregiving: Live Chat Q&A @ 4pm EST TODAY

MoniqueFrahm

Hello everyone and welcome to our first LIVE chat room Q&A!

I will be online from 4-5pm EST (1-2pm PT) on March 6th, 2024.

This is designated hour for us to chat right here on the chat room. I’m going to pose a few questions below. You can answer one question or all of them, you can reply to as many other posts as you want, and you can ask your own questions!

This is YOUR space. Let’s do this!

Questions for today:

What has surprised you most about being a caregiver?
Have there been GOOD surprises along the way?
If you’re new to caregiving, what scares you the most about the future?
If you’ve been a caregiver a while, what advice would you give to a new caregiver?

If you have any trouble posting, you can email me at careconnections@trualta.com

FloridaMadison

Hi @MoniqueFrahm! Can I start by answering any of the questions?

MoniqueFrahm

FloridaMadison Hello! Yes, absolutely!

Scott

Amount of time required. Lack of freedom to go anywhere..,

MoniqueFrahm

Scott Definitely. I think a lot of people would agree with this!

MomMySHero

Scott Agreed

FloridaMadison

How angry it can make me - I'm not usually an angry person, but sometimes I get really upset! And then I get upset for getting upset... it keeps going like that

MoniqueFrahm

FloridaMadison Yes! And then guilt plays a factor as well. Such a hard cycle!

[deleted]

Hello! I'm curious...does anyone keep a journal or notebook to keep track of dates, events, appointments, doctor's reports (falls, eating/sleeping habits, scans, tests, hospital stays)???

MomMySHero

[deleted] good question

MoniqueFrahm

[deleted] Great question! I think everyone is different but what worked for me was a calendar! I had a big calendar up on my wall, where I would write important appointments/events. It had a "Notes" section on the side for any additional information that I wanted to remember. I would definitely recommend keeping track in some form - it gets very hard to juggle so many balls at once!

MomMySHero

@"MoniqueFrahm"#p999

The lack of support from loved ones has been at the top of my list of surprises unfortunately

MoniqueFrahm

MomMySHero I'm so sorry to hear that. Unfortunately, this is something a lot of caregivers experience. What are some ways that you manage it?

MomMySHero

MoniqueFrahm I have learned this is a common issue for caregivers and it is so very sad but at least I now know I am NOT alone

MomMySHero

MoniqueFrahm I was thinking of purchasing a daily planner especially since I manage both my mother's appointments as well as my non-verbal adult brother since my mom is unable to care for him now.

Scott

It surprised me how different each case is..,different dementias..,different timelines. You can't compare someone else's dementia with your person's..,

MoniqueFrahm

Scott This is such a great point. That's part of what makes it so hard. The unpredictability and unknown.

[deleted]

Scott
I've heard the saying "If you know a person with dementia, you know ONE person with dementia" because everyone's experience is so different.

MomMySHero

Did we lose you Monique?

MoniqueFrahm

MomMySHero Still here! I just need to type faster!

MomMySHero

MoniqueFrahm Yeah I noticed your message after I posted that comment...lol

MoniqueFrahm

[deleted] Yes!!! I was thinking of this quote too!

MoniqueFrahm

MomMySHero I think this is a great idea! It sounds like you have a lot on your plate.

MoniqueFrahm

MomMySHero You can also set reminders in your phone! I found that helped me as well.

[deleted]

MomMySHero
I used a basic spiral bound notebook when I was caregiving for my grandpa....I think I filled two notebooks in less than a year! It was not a fancy system, but it worked! I think a planner is a great idea!