Interview with a quadriplegic about life with a caregiver

[@tomstanziola1982]

Margaret, I think you are one HELL of a beautiful and gutsy and amazing lady!! May the Lord bless you and protect you in all you do!! 🥰❤️🌹

[@EmpoweredPara]

Yes!!!!! She's such an amazing person and role model!

[@lestathecat]

Yay Margaret is back! Very real and raw, she is brilliant explaining all the care needs and boundaries xx

[@EmpoweredPara]

Yeah she's a wealth of knowledge!

[@justcallmesuzzie]

They first thing I have to say about this is that I appreciate that she says about her caregiver is, "she is not a maid." I was a caregiver for about 3 years and the families of the people I worked for treated me as a maid even though I had a Master's degree and left my field during COVID to come home and take care of a family member and took care of another person as well.

[@EmpoweredPara]

That sucks 😕. I think respect goes both ways in the care giver/client relationship and sometimes people with disabilities get a feeling of entitlement that is not helpful.

[@alexstokowsky6360]

My spouse is like this. I do some very gross things to help him. It is very hard on my hands and wrists to turn him, since I have rheumatic arthritis and he is 350 pounds, but I do it because it has to be done. All this for free. Despite all I do for him, he nitpicks over small things, and is generally demanding and unappreciative):

[@arsolblanes5058]

Hello girls! I enjoy your talks, especially with the vindication of the figure of the personal assistant, it is something for which we are fighting here in Spain (EU) to explain the difference between a "caregiver" in therapeutic terms and an assistant who is your arms and your legs as Margaret says, which by the way I'm glad to see again, a hug for both of you 🤗🤗

[@patrickcooper6074]

Thanks for the insight into another aspect of your lives.

[@EmpoweredPara]

You're welcome!

[@lindsaydutton6093]

Hi, I use the term ‘PA’s ( Personal Assistants) rather than Caregivers, because I’m responsible for caring for myself , but they assist me. Thank you for your videos ; it’s really interesting to see how other people handle these issues. 😊

[@EmpoweredPara]

That's an interesting distinction between the two terms!

[@jhors7777]

Great to hear from you both and your story. Thank you for posting this helpful video.

[@endtimeawakening5557]

Hi Brittany, You and Margaret are always so helpful with the topics that you cover. I hope all is well with both of you, with prayers and blessings! ❤🙏❤️

[@EmpoweredPara]

Thank you so much!

[@marylightfoot4817]

Haven't needed a caregiver yet but down the line...unsure of trusting a stranger is scary for me. Lived alone all my adult life.

[@EmpoweredPara]

Yeah it's a hard adjustment to make mentally I think.

[@kwadgirl]

Trust me it will give you dignity and freedom. I have all the privacy I want. I set those expectations in advance and course correct as we go.

[@DRUMMER-j-u2x]

I would recommend that you request a criminal record check before you hire a caregiver. I thought I knew the person well enough to skip this precaution and a few months after hiring the person I discovered she was steeling money and small things. I had to fire the person, needless to say. However, this could have all been avoided since it was later discovered that she did have a criminal record. So, my advice would be that no matter how well you think you know a person and no matter how nice and caring they seem to be, always, always, require a criminal record check. Hind sight is 20/20 and lessons are learned. Please, learn from mine.

[@EmpoweredPara]

Yeah that's good advice!!

[@kwadgirl]

I check both references and get a current crim check. Anything older than 6 months is stale!

[@DRUMMER-j-u2x]

@@kwadgirl Correct.

[@SharonNolfi]

Great interview! Does the Canadian government help pay for caregivers? In the U.S., there's very little financial support available.

[@EmpoweredPara]

In Alberta where we live there is government support foe paying for caregivers but it's not a lot. Most people have to pay out of pocket to top up what the government provides in order pay a decent wage

[@2p2walk]

I've had a full time live in caregiver since 2007 and hired her other sister in 2008. so I've had both and that has worked till they'll decide they they wanna retire.

[@EmpoweredPara]

So nice to have around the clock care! I was just talking to a friend who always has to be home at a certain time because her care only works until a certain time in the evening.

[@kwadgirl]

It is great to have long term caregivers. It normalizes life.

[@2p2walk]

@@EmpoweredPara 100%

[@charles_wipman]

Very interesting conversation.

[@tomstanziola1982]

Brittany, I'm not in a wheelchair, but I have a few friends who are. I'm in awe of you, Brittany!! You're a beautiful and amazing and courageous woman!! Lots of love from Pennsylvania, USA!! 🥰❤️🌹 P.S. I pray that the firefighters are getting the wildfires under control! 🙏✝️❤️

[@2p2walk]

How does she make you see her as amazing and or courageous?

[@tomstanziola1982]

@@2p2walk Because at a place that I worked once, we had a group of people come in to teach us about physical challenges. Every one of them had one, and we each had time to spend one-on-one with them. We also participated in various exercises to give us a very slight idea of what it felt like to be blind, deaf, doing ordinary tasks with hands afflicted with RA, and the challenges of being in a wheelchair. That was the hardest one for me, because my upper-arm strength was crap at the time. I had to spend a half hour trying to navigate that chair in ordinary, household surroundings. Nothing special. Just things that paralyzed people deal with on a daily basis. It was the MOST PAINFUL, and STRESSFUL thing I ever had to do, and I made a promise to the Lord that day that I would NEVER take for granted what these people have to do EVERY DAY to live their lives. That is why I have so much love and respect for Brittany and all other people in her situation.

[@patrickcooper6074]

Great response to what sounded, to me, like a "snarky" question .

[@tomstanziola1982]

@@patrickcooper6074 Thank you very much! It was from my heart!! ❤️ The question sounded a little snarky to me, too.

[@EmpoweredPara]

I think the amazing person in this video is Margaret! I was just there to soak up her wisdom!

[@westiepower2020]

Hi Margaret, Hi Brittney! Yes, all of our skin becomes thinner as we get older, even for us A-B. Bruises show more, they take longer to heal, so I’m very happy to hear you take more care of your skin, especially as you age (lol, hard to think of that at your young age) Interesting to find out that PCA’s differ so much as to when they are with their clients. How difficult is it to find a good PCA? Are most people able to keep the PCA for a long time?

[@EmpoweredPara]

I think Margaret's schedule allows her to keep PCA's longer. I've heard many complaints that full time care is harder to find and harder to keep.

[@kwadgirl]

I think I am the exception to the reality. I hear more often that people have a lot of caregiver turnover than I do that they have long term employees.

[@toddz8579]

Kudos to Margaret for sharing just how it is in her everyday life; it highlighted the many things we take for granted. I did notice something curious in the video - Brittany kept tightening and relaxing her grip on her mug. Is this a strength building exercise?

[@EmpoweredPara]

lol I'm just cold and usethe mug to warm up, but it gets too hot to hold no stop

[@toddz8579]

@@EmpoweredPara

[@cherylvl1036]

I’m not in a wheelchair (I use a mobility scooter) but I found seamless underwear at The Gap. Not sure if cotton underwear is important but they are not cotton, only a cotton gusset. They are super comfortable.

[@EmpoweredPara]

Thanks! I'll have a look!

[@kwadgirl]

I do love my knix undies with no seams. I also like that they slip around and my clothes don’t catch on them, bunching up. I wish they made a true boyshort, though. Their boyshort is more of a classic brief.

[@jazysmama3376]

In CA, there is a statewide program that helps pay for caregivers, called IHSS -In Home Support Services. I, unfortunately didn’t qualify and have to pay for that myself which gets expensive. Does Canada have something similar. Otherwise, when you need the help of someone else, it becomes costly, especially for skilled care. Thanks for the video!

[@EmpoweredPara]

We do have a program that helps pay:) It's not the full amount though, but better than nothing!

[@karenshine2925]

In Australia we get all ours paid for.

[@EmpoweredPara]

@karenshine2925 that's awesome:)

[@kwadgirl]

Currently Alberta Health Services funds at the bottom of the pay grid. You can recruit caregivers at this rate, but not the best ones and there isn’t room for increasing wages with inflation. AHS does give periodic increases, but again they usually lag behind inflation.

[@Jaggededge112]

Hello. I finally ordered my new wheelchair, a full two inches smaller than my current one and I got a few different features on my new one. It was my birthday today but was so lonely because I miss my best friend. She would’ve come down and taken me out but she’s no longer with us so that can never happen again. I’m still having trouble getting over her unexpected death.

[@patrickcooper6074]

Happy Birthday to another June baby. Mine is on Friday. I understand how lonely it can be, especially on a birthday, when you are by yourself.

[@Jaggededge112]

@@patrickcooper6074 thank you. Happy birthday to you. I hope your birthday is fabulous!!!

[@EmpoweredPara]

I'm sorry today was a sad day. I bet you have so many great memories of your friend that involve your birthday. Happy Birthday nonetheless and I hope you celebrate in a way that would make your friend proud!

[@EmpoweredPara]

Happy early birthday to you too @patrickcooper6074!

[@IrishGal690]

In Ontario they are called PSW, I moved to Calgary and said it many times and ppl were baffled lol.. they call them "Care'ers" PSW=Personal Support Worker

[@grant4176]

Hi Ladies!! Did someone say thong? 😛 Butt Floss? 😂

[@EmpoweredPara]

Yeah we sure did lol. I'm not a fan of butt floss, but I guess it comes in handy for pressure sore prevention lol.

[@grant4176]

@@EmpoweredPara Yeah..always look on the bright side! No pressure sores but your bumhole is severed in half!! 😂😂😂😂

[@kwadgirl]

Literally only when I’ve got a little irritated spot that comes and goes for me. Otherwise it’s a bacterial super highway

[@karenshine2925]

I find this fascinating that you have one one and have had so few in your lifetime. I currently have 7 different people a week. We have a hugely casualised employment market with people doing a few hours here and then for all different clients. I’d love to be able to have just 2-3 good ones covering all the work so they learn how I like things. Also the constant recruitment is draining when the average person lasts. 6-9 months. What do you do when they have their holidays or they call in sick? Do you have a plan B? This is why I have so many workers. I’m Australia they are called support workers.

[@EmpoweredPara]

Yeah I was blown away at how long Margaret has managed to keep her care workers!

[@kwadgirl]

I have one good casual person and I try to plan a trip with them when my gal is gone. I also have a husband to fall back on and have used agency care in a pinch.

[@CarbonFiberSwan]

What would be your (or Margaret’s) counsel on becoming a caretaker for a long time friend? I’ve got a friend who has been a quadriplegic for 9 years. I will be moving in with him soon to be his caretaker. I have never done anything like it before and I’m a bit nervous about how it will affect our friendship, and whether I am capable of handling the day to day things that it will require of me.

[@EmpoweredPara]

I'm not sure I'm the right person to weigh in on this but I think as long g as you guys go into the situation with an agreement to be open and honest and not judge one another if it doesn't work out, then I think it should be fine. Hard not to get some tangled up feelings though when you are friends and now employee/employer.

[@westiepower2020]

All’s right with the world again - it’s Tuesday!

[@EmpoweredPara]

Lol yeah better late than never!

[@1013tenthirteen]

I would love to meet Margarets husband and caregiver!

[@EmpoweredPara]

I'll ask her but her husband is pretty shy so I think he's not a camera guy lol.

[@kwadgirl]

Maybe the caregiver though!

[@johnvelas70]

Your laugh for the day: the little girl who is now a paraplegic decided to approach a boy she likes. The 1st thing he asked was if the person next to her was her Nurse or sister "Because she's kind of hot".

[@EmpoweredPara]

Not sure if that's funny or annoying lol

[@westiepower2020]

@@EmpoweredParaI think it is annoying