Caregiving Strategies: Caring & Supporting Adults Living with Heart Failure

Aug 26, 2023

Caregiving Strategies: Caring & Supporting Adults Living with Heart Failure

Family caregivers play an invaluable part in supporting people living with heart failure. However, this role can be stressful and overwhelming, and it may be difficult for caregivers to balance their needs with their care recipient.

In recognition of Heart Month, join us for a presentation given by two heart failure caregivers, Cindy Yip and John Yudelman, who will share their challenges, experiences, and helpful supports they found on their caregiver journeys. You will also hear from Dr. Phyllis Billia, cardiologist at UHN’s Peter Munk Cardiac Centre. Dr. Billia specializes in heart failure, focused on patients undergoing advanced therapies. She will provide practical resources and explain care strategies and support for caregivers.

#caregiver #heartmonth #heartfailure

Content

20.96 -> Good afternoon, everyone.

22.37 -> Welcome to the Ontario Caregiver Organization's Webinar series.

26.45 -> These webinars bring together caregivers

28.58 -> and subject matter experts to explore topics of interest to caregivers.

33.13 -> We do this to support and engage chosen

35.57 -> family, friends, and neighbours who are caring for someone.

38.61 -> I'm Felicia Hart and I will be your moderator for today.

42.09 -> We begin today's session by acknowledging

44.25 -> the Indigenous peoples of all the lands we are on today.

47.24 -> I am coming to you from Clarington, Ontario,

49.896 -> which is situated within the traditional and treaty territory

53.13 -> of the Mississauga and Chippewa of the Anishinaabe,

56.17 -> known today as the Williams Treaty's First Nations,

59.49 -> I came to be here through generations of immigration to this land.

63.21 -> At the OCO, we are working to better understand how we can be meaningful allies,

67.8 -> and support the recommendations from the Truth and Reconciliation Commission.

72.01 -> If you haven't already, after today's session,

74.72 -> I encourage you to learn more about the Indigenous peoples and treaties

78.08 -> of the land you live and work on at native-land.ca in the chat box.

82.96 -> So our webinar today is called

84.81 -> Caregiving Strategies: Supporting Adults Living with Heart Failure.

88.73 -> I would like to welcome our speakers for today.

91.41 -> We have Dr. Yas Moayedi, who completed her internal

94.77 -> medicine, residency, cardiology and heart failure fellowship in Toronto.

99.2 -> She sought to broaden her clinical

100.85 -> and research skills and experiences with further training

103.81 -> at Stanford University in Digital health and precision medicine.

107.85 -> She joined the University Health Network

110.32 -> Cardiology division in 2020 as an advanced heart failure cardiologist.

115.73 -> We also have Cindy Yip, who is a professional engineer

119.57 -> and doctoral graduate from the University of Toronto.

123.04 -> As Cindy continues her professional journey to advanced patient care,

126.41 -> she is also a sole caregiver for her father, living with multiple heart conditions.

132.408 -> A passionate patient advocate, a co founder of FIND ACHD,

136.29 -> adult congenital heart disease, and an immigrant.

140.48 -> We also have John Yudelman,

142.45 -> who has been a caregiver to his wife for the past 19 years.

145.97 -> Now retired with a background in government, NGOs, art,

149.64 -> and community organization, he has turned caregiving into a project

153.81 -> focusing on caregiver supports and advocacy.

156.4 -> So, as you can see, we have a wonderful lineup of presenters today.

159.16 -> We really look forward to these.

160.76 -> So I will now pass it on over to Dr. Moayedi

163.778 -> and ask you to please join us on camera.

166.17 -> Thank you.

170.64 -> Thank you, Felicia, and thank you for this opportunity.

174.12 -> It's really a pleasure to be here.

175.85 -> Happy Thursday, everyone.

177.69 -> So I've been asked to give you a preamble

180.45 -> on the condition of heart failure, and I'd like to start with the definition.

184.61 -> So, heart failure describes where the heart is unable to meet the needs of the body,

190.57 -> either because it is too weak or too stiff.

194.33 -> And so that's where the terminology

196.33 -> of reduced ejection fraction comes from where the heart is too weak

200.983 -> or preserved ejection fraction comes from where the heart is too stiff.

205.69 -> Heart failure does not mean that the heart has stopped working or is beyond repair.

211.53 -> And so this is where language matters.

214.49 -> I want you to be aware that in the field we are starting to move away from the word

219.29 -> failure to focus more on function so that we can communicate that this

224.33 -> condition is really not a hopeless condition, and that there are many

228.13 -> treatments that are available so that patients can live longer.

231.77 -> [03:51 INAUDIBLE] And heart failure is common.

240.97 -> It affects nearly 1 million Canadians and close to 30 million people worldwide.

248.85 -> So that's nearly all of Canada's

250.69 -> population, and that number is continuing to increase.

256.04 -> So the advances of heart failure have led to complex medical regimens

261.204 -> that are associated with huge challenge [04:23 INAUDIBLE] patients to follow.

265.57 -> Therefore, and I don't need to mention

267.8 -> this on this webinar, but many individuals living with heart

271.28 -> failure rely on support from their spouses, partners, family members,

276.25 -> friends, neighbours, and other people

278.83 -> in the community, which we refer to as a caregiver role.

286.64 -> Now, a patient living with heart failure

289.21 -> may look at the staircase and just find it daunting to climb.

295.04 -> Heart failure is associated

296.54 -> with functional limitations, depression, cognitive impairments.

301.8 -> And some of the symptoms associated

303.57 -> with heart failure are as simple as shortness of breath.

307.09 -> Preliminarily with shortness of breath, with climbing stairs.

310.41 -> And that's how we actually quantify the symptoms of heart failure as to how

315.57 -> many flights of stairs you can actually climb.

318.6 -> Symptoms can be associated with swelling

321.21 -> or worsening swelling in the ankles, the lower legs, the abdomen.

328.56 -> I think we're still on that slide.

332.09 -> They can be associated with loss of appetite, nausea, feeling confused,

337.13 -> dizzy or light headed, and just not able to think clearly.

342.17 -> So patients with heart failure need

344.09 -> to engage in what we call these self care behaviors on a daily basis.

348.92 -> And that may mean medical medication management, symptom recognition,

354.45 -> monitoring their weights on a daily basis, or adhering to a diet or exercise regimen.

360.36 -> But many of these [06:01 INAUDIBLE] behaviors are just too complex for patients to do

365.57 -> independently, which is why the caregiver is so crucial.

372.72 -> I wanted to tell you a little bit about the trajectory of heart failure.

376.89 -> And this is where we refer to the course

379.53 -> of disease over time, from the onset to its progression.

384.77 -> Heart failure is very different from the trajectory of cancer, for example.

390.53 -> Where, generally speaking, patients may be stable

394.674 -> and then have a rapid decline over months to weeks.

398.6 -> The natural history of heart failure often follows a variable trajectory,

404.25 -> one that's characterized by alternating periods of stability and instability.

409.85 -> And these values that you see

411.36 -> on the second panel are usually acute episodes of care or hospitalizations.

417.6 -> Now, over time, the condition may worsen and patients may become more symptomatic,

422.89 -> leading to more frequent hospitalizations and decreased quality of life.

427.29 -> Now, with each of these decompensations or

430.41 -> valleys, the hope is to regain the previous function.

434.73 -> But often patients feel like they never

436.85 -> really get back to that baseline before the valley.

443.48 -> And so, the caregiver's role may also change based on these phases of illness.

449.97 -> Initially, heart failure may be mild

452.73 -> and only cause occasional symptoms such as fatigue or shortness of breath,

457.65 -> where the level of care is just related self care for symptom management or

462.89 -> medication management. With decompensations,

466.53 -> so this is where we're referring to hospitalizations,

469.6 -> the caregiver may need help with increased

472.53 -> symptom management or intensified monitoring or even psychological support.

478.48 -> Last thing I was mentioning is that this level of care really changes

484.21 -> with these transitions and as the disease progresses to end stage needs,

489.65 -> patients need more help making decisions around advanced planning.

497.16 -> So, the best way to help someone manage

499.89 -> the symptoms of heart failure is to support them through their journey.

504.21 -> And this may include encouraging them

506.35 -> to eat a healthy diet, limiting salt and sugar and processed

510.48 -> foods, as well as eliminating alcohol from their diet.

514.41 -> Monitoring potassium potassium happens to be very important

519.17 -> in heart failure, as high or low levels can affect the heart.

524.85 -> We also recommend restricting fluids.

527.53 -> So patients with heart failure

529.89 -> generally should limit their fluid intake to 1.5 to two litres a day.

534.69 -> And this doesn't just include water.

537.32 -> Here we're referring to fluid that's found in fruits, vegetables, soups.

542.32 -> So, really reiterating the message through education,

546.63 -> and even sometimes requiring a dietitian consult is required.

551.2 -> I wanted to give you some other tips because I think it's important

556.61 -> for caregivers to really introduce themselves to the clinicians.

561.61 -> Bring a list of questions and concern to appointments. Act as a translator,

566.69 -> but also know that if you're not comfortable translating,

569.77 -> you can request professional interpreters to help in the healthcare setting.

575.49 -> Please feel free to speak up for you or

577.99 -> your care recipient if you don't understand what is said.

581.41 -> And I think what's really important, particularly as we live in a very

587.08 -> multicultural city, is to explain your cultural considerations.

592.69 -> So, there are different ways to perceive health and wellness.

596.41 -> One of the key roles of the caregiver is

598.63 -> to advocate on behalf of the patient, and explain these cultural differences,

604.25 -> whether it's related to perceptions of medications or diet.

608.32 -> So really, the care should [10:10 INAUDIBLE]one size fits all,

612.869 -> and one that also respects your cultural considerations.

619.76 -> A few practical tips

622.41 -> with regard to financial assistance if your employment is impacted by your

628.39 -> caregiving role, you may require a social worker in your circle of care just

634.61 -> to figure out what types of assistance you may be eligible for.

639.73 -> It's important to ask your family and friends for help with potential tasks

645.32 -> as driving to appointments, grocery shopping, and what we've come

650.91 -> to understand is that your family and friends may not know how to help.

655.13 -> So communicating specific about what you

657.87 -> need may be helpful for the patient, yourself and your family and friends.

664.01 -> Again, get involved with your cardiology team.

667.61 -> Introduce yourself. Take an active role in understanding

671.17 -> the condition, the available treatments and the outcomes.

676.21 -> Feel free to ask questions and don't be shy to look for answers.

682.21 -> So I've only given you a very short

685.89 -> snapshot of heart failure, the diagnosis and the treatment.

689.68 -> And I apologise for the noise

690.89 -> in the background earlier, but there is a tonne of resources available

695.25 -> in the Heart Hub link that's available to you on the chat box as well.

700.08 -> So feel free to visit that website to get

703.07 -> more information and I'm also available for more questions at the end.

706.41 -> Thank you.

709.68 -> Thank you very much, Dr. Moayedi.

711.6 -> We really appreciate you taking the time

713.05 -> to walk through heart function, the elements of heart failure as well,

717.56 -> and some really practical tips that caregivers take away today.

720.33 -> So thank you for your time.

722.17 -> I will now be passing it on over to Cindy.

724.93 -> Could you please join us on camera? Great.

727.81 -> Thank you so much, Felicia, for introducing us.

731.08 -> And thank you for the opportunity to share my journey about juggling my roles as

735.75 -> a caregiver and working professional, and an immigrant.

739.81 -> I'm sure my story is a new offering to many of you,

743.733 -> and I'd love to hear your thoughts and your strategy and a bit

748.08 -> of learning from you as well in this webinar.

752.8 -> Next slide, please.

755.21 -> So, what is seemingly an ordinary father

757.57 -> and daughter photo here is actually a man with a broken heart.

761.33 -> And what you're looking at is a very fearful little child.

764.69 -> That was me.

766.49 -> My father has been living with rheumatic

768.97 -> heart disease since he was seven years old.

771.73 -> So you can imagine growing up, I grew up with that disease with him too.

777.08 -> He went on with life, got married, and started a family,

781.64 -> and I went to high school like everyone else.

783.85 -> But one day, my father blacked out at work, and the next thing I know,

789.17 -> he was in emergency, he was in ICU, and then the next thing is he needed

793.89 -> a heart valve replacement because his valve wasn't working.

796.77 -> And he ended up having his first open heart surgery to replace his mitral valve.

802.73 -> My mother took care of him for another good 20 something years, until she passed away.

809.329 -> In early 2021, right in the middle of the pandemic

813.023 -> just to make things even more complicated and stressful,

816.69 -> he was once again rushed to the emergency room.

820.01 -> And shortly after that, he ended up getting his second open heart

824.49 -> surgery to replace his mechanical mitral valve.

829.81 -> He now lives with a mitral valve disorder,

833.41 -> a dilated aorta, atrial fibrillation, and heart failure.

839.41 -> So a relatively typical journey to ending up with heart failure.

845.61 -> And I'm sure I'm not alone in this.

848.41 -> And over the years, my caregiver duties grows as my father's health evolves.

855.89 -> And what I really noticed was the change

858.73 -> in my caregiver's duty was so notably increased when my mother passed away

865.53 -> and when I became the only sole caregiver for my father.

871.29 -> And I hope to speak to some of those

873.37 -> challenges and share some of that with you today.

876.65 -> And the top three that I really want to focus on today is first,

880.25 -> I still find myself juggling many different roles in my life.

884.17 -> I was a working professional, I was trying to establish my career

888.29 -> and trying to get into any stable relationship, et cetera.

892.69 -> There was just a lot going on.

894.69 -> Secondly, it's overcoming the cultural differences.

899.97 -> It was a real challenge because my father is an immigrant and English isn't his

904.67 -> first language and Canada is a new country for him.

908.01 -> And thirdly, like many of you out there,

910.37 -> navigating the Canadian health ecosystem is never easy.

914.69 -> And that really added even more stress.

918.85 -> So let me walk you through each of those.

923.92 -> Growing up, I had my mind set to fix my father's heart problem, to no surprise,

930.21 -> because he had this as he was a kid and I grew up with him with that.

935.13 -> So I was very eager.

937.01 -> I graduated from Queen's University as one

939.61 -> of the few female engineers at a time, a bit of a black sheep.

943.33 -> And then I went ahead and obtained my PhD from the University of Toronto

949.45 -> and surprise, specializing in heart failure research; was really, really adamant about

956.33 -> wanting a very meaningful career that can fix his problem and advance

962.37 -> patient outcome in any way, and that was so important to me.

967.37 -> But as I go through this journey,

969.69 -> I also realized with multiple heart issues that my father had,

973.77 -> that his health is going to change over time and most likely worsen as he ages,

980.93 -> and my caregiving responsibility would increase.

984.57 -> And along the way there will be many unexpected needs.

988.85 -> And this meant that relocating for any

991.08 -> employment would not be possible or would be very challenging for me.

995.33 -> And as a result, I decided against going overseas for post doctoral fellowship

1000.21 -> and Professorship, a very atypical path for a PhD graduate.

1005.81 -> I also anticipated a high likelihood

1008.33 -> of needing flexibility in my work arrangements, and the ability to work

1013.21 -> remotely later on in my career as my father's health deteriorates.

1017.25 -> This meant that a role in a research laboratory, which I started out my training on,

1022.93 -> or working in a medical device company, thinking I can come up with something

1026.93 -> to fix my father's valve problem and where I started my career wouldn't be

1034.07 -> suitable for the long run because all these roles require in person work.

1038.56 -> So, what really helped me to overcome this first challenge is that very early

1044.73 -> in my professional journey to explore both traditional and alternative career options

1050.53 -> and be willing to take a very holistic look at what are my skills?

1055.04 -> What are my transferable skills and how

1057.39 -> can I apply that in a very creative way to achieve the career goal that I'm

1062.56 -> interested in, and understand the flexibility early.

1065.73 -> As I mentioned, I knew at one point I

1069.08 -> needed a job in a career that can support remote work.

1072.28 -> So I can offer a [17:53 INAUDIBLE] like this during my lunch break, during a work day.

1077.32 -> So how do I tailor that to my career planning goal?

1082.21 -> And as I start to work and enter the workforce,

1087.36 -> what I also realised over time, is that talk

1090.53 -> to my employer, tell them my situation, see what they can do for me,

1095.93 -> what flexibility they can offer to me as a supportive employer.

1101.93 -> And ask them, what are some of the caregiver benefits

1105.53 -> that they offer and if there is any, how can I use them?

1109.97 -> Such as employee assistant program,

1112.28 -> which has been very helpful to support my mental health.

1115.84 -> And on top of that, those are all offered as part of your profession and therefore

1121.49 -> they are great resources that are very cost effective which then

1127.65 -> reduce your financial burden as you serve as a caregiver.

1134.53 -> And most importantly, the last message I want to talk about here

1138.04 -> is really don't give up your career dream and just be flexible and be able

1143.01 -> to proactively plan for that meaningful career.

1146.36 -> Next slide please.

1150.76 -> Another thing I have learned is to take care of my mental health.

1154.97 -> It was something I neglected for a very long

1157.21 -> time in my career, in the early stage at least.

1160.28 -> And over time I find resources are out there to support you.

1165.17 -> And one that I want to highlight here is the Workplace Mental Health Playbook,

1169.8 -> offered by CAMH, that are tailored for those who are business minded,

1175.84 -> who are business leaders and who are working professionals.

1179.04 -> And it's a free resource that can help

1181.34 -> you go through some of those difficult days when you're juggling way too many

1185.17 -> things, wearing too many hats in your workday and your caregiver days.

1190.12 -> Next slide please.

1192.68 -> My father is an immigrant, as I mentioned earlier,

1196.478 -> and English isn't his first language.

1198.97 -> So, my second biggest challenge is to overcome these cultural differences.

1204.8 -> As you have heard earlier in this, women are asked questions.

1209.28 -> Well, as Asians we are culturally taught

1213.45 -> to be humble and always respect the doctors.

1216.8 -> And that unfortunately means don't ever ask questions,

1220.494 -> especially don't question the doctors because they're the expert.

1224.53 -> Don't ask for information unless given permission to, otherwise you're perceived as

1231.65 -> being rude, and always nod so that people know you're polite, rather than

1237.97 -> nod because you want to let them know that you understand what you were told.

1242.25 -> So unfortunately, this also means that a lot of

1246.168 -> the disease management information gets lost when they

1250.27 -> get passed to my father and a lot of the time healthcare teams may

1255.71 -> mistake that oh, he is nodding, therefore he understood us.

1260.53 -> And that becomes even a bigger problem

1263.32 -> because then the doctors and the nurses and the healthcare team misunderstood

1268.21 -> that oh, my father is fluent in English, he's nodding, therefore you don't have

1273.83 -> to be in the appointment, please sit outside and wait for us

1277.773 -> because he doesn't seem to have any language barrier.

1281.32 -> So after each hospital discharge

1283.69 -> and medical appointment, I become a little detective every single

1288.93 -> time when I get home trying to piece together what these

1293.49 -> different pieces of information he was told and what ultimately his needs are.

1298.93 -> And at the end of the day,

1300.73 -> this really translates to a suboptimal care and patient outcome that I can offer

1306.01 -> him as a caregiver and also added more stress for me as a caregiver.

1314 -> And I know that to overcome the cultural challenge,

1317.962 -> I know that I need to do something to help

1320.89 -> the healthcare provider and the whole ecosystem.

1323.93 -> So, what I really end up doing as a coping mechanism, or strategy,

1329.826 -> is that I actually speak up, quite opposite to what I am culturally taught to do,

1335.837 -> and offer solutions to the caregiver community by working with various groups.

1340.49 -> So here, shown on the right hand side of the screen, if you can click there.

1345.89 -> It's one example of working as a volunteer with the Ted Rogers Center for Heart Research.

1354.49 -> And put together a patient's resource to speak to some

1359.07 -> of the tips for non-English speaking patients so that other people can learn

1365.45 -> from my experience and be more proactive about how to navigate this situation.

1371.05 -> Next slide, please.

1376.36 -> Another strategy I have taken to

1381.57 -> address and overcome this cultural differences challenge is that I also reach

1386.84 -> out to different organizations to see how I can help them as a caregiver and also

1391.32 -> help them understand what are my burning points, what are my main challenges when it

1395.63 -> comes to dealing with non-English speaking patients as a caregiver.

1400.05 -> So here's another example where I had

1402.96 -> the opportunity to work with HeartLife Foundation,

1404.97 -> the Chinese Canadian and Bring Health Association,

1408.12 -> the Canadian Cardiovascular Society, [inaudible 00:23:31] and the Canadian Heart Failure

1414.25 -> Society to deliver a patient resource on COVID-19 in five different languages.

1419.56 -> So, I continue to have those dialogue with all these different organizations

1423.25 -> to offer them translation help or content help or perspective of different cultures

1429.01 -> so that when they are developing patient resources, it's going to be relevant

1433.89 -> to those who don't speak English as a first language.

1440.49 -> Next slide, please.

1442.17 -> The third challenge is navigating the Canadian health ecosystem.

1446.65 -> All the different trips and hospitals,

1449.57 -> and getting the blood tests, and connecting to the family doctor.

1453.97 -> And then talking to the specialist, and making sure the medication is there

1457.93 -> at the pharmacy when I need them, and correctly prescribed sometimes.

1462.08 -> And making sure the dentist is aware

1463.93 -> of my father's special needs because of his complications with his heart.

1469.81 -> They all add up.

1470.97 -> And all these trips

1473.01 -> and communication with various healthcare touch points takes an immense amount

1477.25 -> of energy, time and coordination, while working in a full time job.

1482.01 -> So, there were a few things that I found that was quite useful for me.

1486.84 -> Next slide, please.

1488.41 -> The first is being able to track his

1491.07 -> medical notes and [inaudible 00:24:52] from the hospital so that I can actually understand what was

1498.59 -> being communicated and kind of monitor his progression over time.

1502.65 -> So, what I found very useful as a resource

1505.53 -> was MyChart, for those who are in Ontario, because it actually is a one stop shop

1511.69 -> for the information that you need whenever your loved one is in a hospital.

1519.05 -> And that way I can review the medical notes,

1521.8 -> and understand my father's disease management needs, and also prepare

1525.57 -> questions to ask the doctor at each of his medical appointments

1530.602 -> in the cases where I was allowed to join him in the appointment.

1536.92 -> Second thing that I found was very

1538.97 -> helpful is how to go about dealing with his complex

1544.41 -> medication regimen, which is a very typical experience

1547.6 -> for many of us, as you have heard earlier on in this webinar.

1552.32 -> And what I found very useful is that when I receive the prescription

1558.73 -> from the doctor, don't just walk away and nod and say thank you,

1563.307 -> but also ask the doctor, when I need a renewal for this

1566.84 -> prescription, who is going to be responsible for it?

1569.81 -> Is it the family doctor, is it the dentist?

1573.17 -> Is it the cardiologist?

1574.97 -> Or is it some other specialist, like the dietitians?

1578.41 -> And that really helped me prepare

1581.952 -> when his prescription is running out and I need to ask for a renewal.

1588.77 -> And that also helps smooth out

1590.31 -> the communication between the pharmacist, myself, my father and all the different

1594.53 -> doctors that are involved in his care journey.

1599.45 -> And lastly, one thing that I have leaned on a lot is technology.

1605.12 -> So I started using an app from a pharmacy so

1608.44 -> that I can manage all his prescriptions, so I know when his prescription needs

1612.12 -> to be refilled, when it should be renewed, and also manage the payment remotely so

1618.47 -> that I can do that during break time at work.

1620.93 -> And also set up notification with this app so that it will prompt me when

1626.15 -> the medication is actually ready to pick up, so I can plan my commute between work,

1631.57 -> grocery store, pharmacies, home and various appointments.

1635.29 -> So, that was a big time saving for me.

1640.04 -> And lastly, I know my journey, as I say, is not new nor is it unique.

1645.21 -> So, what I keep in my mind that helped me stay calm along the way and helped me stay

1651.17 -> systematic and logical, it's by knowing I'm not alone.

1655.93 -> And I think that message is always there

1658.49 -> to prompt me in my little head so that you can ground me.

1662.21 -> And it really helped me focus on what I

1664.71 -> need to do best is to care for myself and my father.

1670.04 -> And with that I want to leave you

1672.05 -> with a little bit of resource that I found was very useful and very trustworthy.

1678.21 -> And I do say trustworthy is very important because there's so many information out

1682.57 -> there and that sometimes can be a cause of stress for caregivers,

1686.15 -> trying to find useful information to make our lives a little bit easier.

1691.25 -> So, some of these examples here, as you mentioned earlier

1694.29 -> on in the webinar, the Heart Hub has a lot of information.

1697.21 -> If you want to learn more about my story,

1699.76 -> feel free to go there and read a little bit about my story,

1702.49 -> but also learn from other caregiver stories and their strategies.

1707.93 -> And another place is

1709.49 -> the HeartLife Foundation, which is a patient led organization,

1712.97 -> and you can find useful information there as well,

1716.81 -> such as the Canadian Heart Failure Patient and Caregiver Charter.

1720.77 -> I think that is a very helpful resource to understand what are my rights, as

1725.49 -> a caregiver, so that you can be part of the care journey with your loved ones.

1731.41 -> And I would say the third thing here,

1735.29 -> highlighted in the lower left corner of this slide, is technology.

1740.32 -> There are many useful technologies out there

1742.93 -> that may either give you useful information in a one stop shop manner,

1747.68 -> like MyChart, or connect you with others in the heart failure community so that you

1752.65 -> know you're not alone, such as the My Heart Failure apps,

1756.6 -> or help you monitor your heart health, such as the Medly app shown here.

1761.77 -> So don't forget, if I were to leave you with one message is,

1765.798 -> don't forget all these trusted resources and support you have.

1769.25 -> And also don't forget the resources

1772.12 -> available in the Ontario Caregiver Organization as well.

1775.53 -> So, thank you so much, and with that, I will pass it back to you, Felicia.

1779.05 -> Cindy, thank you for sharing your personal caregiving story with us.

1785.24 -> I thought it was so wonderful to hear

1787.08 -> about how your career goal was really to see how you could help your father.

1792.29 -> I think that was so incredibly touching.

1794.6 -> You also really outlined some key

1797.12 -> challenges that I think a lot of caregivers can relate to,

1800.08 -> but then also some solutions you've been able to find.

1803.449 -> So, incredibly helpful. Thank you again.

1806.8 -> So John, it's now time for your presentation.

1809.81 -> I'd like to invite you to join us

1811.69 -> on camera, please, and then I'll be over to you.

1816.92 -> Thank you, Felicia, and thank you Yas and Cindy.

1819.89 -> I really appreciated hearing your presentations.

1823.57 -> I think I'm going to be trying to make use of them a bit as well.

1828.12 -> Just to tell you a little bit about myself, I've been married for 36 years.

1832.6 -> I have two adult daughters.

1834.29 -> One is launching her career and the other lives overseas.

1838.08 -> I live in the shadow of three or four major Ontario specialist hospitals

1844.29 -> in Toronto, which is great for specialist care, but it actually is terrible

1849.69 -> for trying to connect to the local communities in the area.

1855.05 -> The journey has been really a multi sickness journey, starting with lupus and involving

1863.29 -> osteoporosis and heart valve issues, and now heart failure and multi organ issues.

1872.21 -> The current status is probably the stiff heart of a heart failure with preserved

1877.01 -> ejection fraction is a group two pulmonary hypertension diagnosis.

1883.49 -> We're at stage three or possibly four of chronic kidney disease.

1889.05 -> There's diuretic resistance, which means the medicines that one takes

1893.01 -> often to manage the symptoms of heart failure aren't working as well.

1898.41 -> We have daily hospital based monitoring and we've had two or three,

1903.6 -> what you might call exuberances, I would say in terms of Yas's trajectory,

1910.41 -> we're probably somewhere towards the end.

1914.29 -> Somewhere between what is labelled care transitions and end of life.

1919.25 -> So, I would like to talk a little bit, and I'll try and be as fast as I can,

1925.21 -> because I think the most important thing is to hear other caregiver questions.

1930.72 -> But I'm just going to briefly talk about

1932.6 -> my experience, some observations and lessons and tips I've had.

1937.93 -> So, the first one is really

1942.17 -> discovering that the stiff heart is really a terminal multi organ condition,

1947.81 -> and it's a particular kind of condition that has no available prognosis.

1954.25 -> In other words,

1955.6 -> we keep getting told there's no statistics to try to tell you where it's going.

1961.45 -> Where that leaves me is kind of in this

1965.12 -> situation and my wife in a situation of radical uncertainty.

1969.89 -> If you looked at the cancer trajectory,

1972 -> at least you would know kind of where things are going.

1974.12 -> We don't know where things are going.

1976.36 -> So, you have to hold in place the idea that you're living a normal existence.

1981.57 -> You're somewhere in this

1983.89 -> entering this palliative grey zone, whatever that means for heart failure,

1988.6 -> which isn't the same, or what it means for cancer.

1991.6 -> And the idea that there's a terminal condition altogether at the same time.

1997.386 -> There's lots of tensions, ambivalences,

2000.12 -> like hope and despair or holding on, letting go.

2005.69 -> And that bounces you all over,

2008.05 -> and it bounces other people all over, including the medical system.

2013.25 -> In my journey,

2014.41 -> I've discovered that underneath the medical system and circle care

2018.49 -> and everything else, there's lots of values and strong feelings

2025.84 -> about what it means to be a family, or what sickness means, or what death means.

2031.41 -> And all this really boils down to you kind of got a downward slope.

2036.45 -> There's a chart in the appendix that kind of speaks to the caregiver journey,

2040.97 -> but each time you hit something, it kind of reformulates.

2045.05 -> You have to kind of reformulate who you are,

2048.668 -> and your spouse has to as well, and that in itself becomes a big stress.

2054.09 -> What I would say is the management

2057.53 -> of the issue, which I think Cindy spoke eloquently to, is difficult.

2062.57 -> There's no denying that.

2065.41 -> But I would say the hardest part, I found is actually

2069.01 -> what I call ethical dilemmas, like decisions about what to do in terms

2072.93 -> of trade offs or how to handle the uncertainty.

2075.72 -> Next slide.

2077.8 -> So, my main observations are, in my journey anyway,

2083.13 -> to try and get community resources or deal with things from that perspective.

2089.44 -> You can only really generate that when

2092.61 -> you tax the hospital system or you're in emergency rooms,

2097.77 -> you've been in a situation, and the system doesn't respond from a resource

2105.16 -> perspective to support caregivers unless there's really a crisis.

2110.57 -> The second major learning, I would say,

2112.57 -> is there's a lot on education out there about salts and fluids.

2118.85 -> But the next level, which is, okay, I've taken the SCALE course.

2123.88 -> Okay. I'd like to be able to talk to other people in a similar situation.

2131.207 -> So far, the Ted Rogers and the Women's College and most of the hospitals,

2135.03 -> there's no acute heart failure support groups.

2138.13 -> There's no social workers supporting caregivers.

2142.13 -> The Medly doesn't have a social worker associated with it.

2147.72 -> When you get to the palliative period,

2149.77 -> there's a lot of discussion about goals of care for the patient.

2154.65 -> It's very patient focused, but there's no goals of care for the caregiver.

2159.76 -> And there's basically no model of shared decision making.

2165.49 -> We are effectively running what I would

2167.83 -> argue is a complex care bed in the home setting.

2171.09 -> We have Medly, we have a lot of blood lab

2174.41 -> work being done here, but the hospital systems that are a big part of my life

2182.33 -> don't really - are all focused on the patient.

2185.09 -> They don't take account of the fact that I live with the patient and take care of her.

2190.13 -> So I'm just going to briefly talk about some of the things I've learned.

2194.81 -> So the main thing I've learned is you kind

2197.39 -> of got to make your household into kind of - it's normally a relational place.

2203.45 -> You have daughters and husbands and wives, but it's being matched up against a very

2209.45 -> large healthcare corporation, the corporation is kind of an urgent place

2214.77 -> where things happen and it has a clear, command down style.

2220.04 -> Talking about your sister or your brother

2222.57 -> or your wife, that's more about the relational style.

2225.68 -> But to make it work,

2227.77 -> you kind of have to turn yourself somewhat into a small family corporation.

2232.76 -> So, the first thing I would say is I don't think the government really is

2238.85 -> working on the family needs or the couple needs.

2242.13 -> So, my tip here would be the first question one asks is, is it going to be the couple

2248.89 -> or the wider care family making the decision making?

2252.45 -> I think Cindy spoke to this a bit.

2254.81 -> There's another question that one has to answer

2257.45 -> is about how you're going to communicate to the greater group.

2260.65 -> Because if you don't communicate, then they are saying you never told them,

2264.97 -> but if you do communicate, they might not feel that they're being heard.

2270.05 -> I would recommend,

2271.77 -> at least at the beginning, if you're in a couple situation,

2275.97 -> there's a lot of relational tensions involved.

2279.05 -> I would recommend getting someone to help with that as soon as possible.

2283.16 -> I think it's very helpful through the journey.

2285.24 -> Because, as I said, the couple's identities keep changing.

2290.044 -> If you don't have a spouse or a child,

2292.89 -> my recommendation is that, one, try and find a private, independent case manager.

2299.2 -> Start having at least a meeting with them

2302.58 -> and they effectively might be able to accompany you through some of this stuff.

2308.72 -> On the other side, I would say

2312.16 -> you need to recognize heart failure as a multi organ thing.

2315.72 -> It's not just about hearts.

2317.16 -> It's about kidneys and other things.

2319.61 -> So, I think, as a navigator and advocate, you should be trying to get other

2325.61 -> specialists like a nephrologist or a dietitian on the team.

2329.49 -> I found in my research

2332.45 -> two sites that I thought were significantly good and reliable

2338.24 -> and provide more information than can be found in the current Canadian sites.

2343.77 -> One is the British Heart Failure Society site,

2347.61 -> which gives much more information about the trajectory all the way to the end.

2352.05 -> And if you're looking from the end back,

2355.61 -> the Canadian Virtual Hospital site is pretty good.

2358.53 -> I, like Cindy, think learning everything you can is useful.

2363.547 -> When you're at home, I think some of the things I've done is

2367.97 -> I've actually commissioned a nursing report from another health care agency

2373.33 -> to try and argue with home care about the level of care needed.

2378.53 -> I've set up in the home setting an idea,

2383.41 -> I think physical activity, as Yas mentioned, is pretty critical,

2388.61 -> both from a heart muscle perspective, but also if you're suffering from fatigue,

2395.61 -> it's one of the few things that probably can help manage the symptom of fatigue.

2400.77 -> So trying to get a yoga instructor or someone to come in.

2406.227 -> When I'm trying to deal with the advocacy end,

2411.68 -> some of the things I've learned is there is a patient relations office inside

2417.29 -> a major health facility who is available if you're having difficulty.

2424.13 -> The big thing is to try and find a partner to work with because the system is

2428.81 -> the system and it's difficult for everyone, if you can get that.

2432.49 -> I have considered, there's a secret thing in home care services called Family Managed Care.

2440.68 -> It's kind of an exception,

2442.2 -> but it's one that people who have complex care conditions,

2448.16 -> particularly children and their parents use, which allows you to get the home care

2456.01 -> resources in the form of money and then you manage that process yourself.

2461.2 -> The only spousal piece I've been able

2463.72 -> to find directly is the Well Spouse Association,

2467.05 -> which is a self help group that operates in zoom out of America. Next slide.

2474.72 -> Okay, so here's some of the nitty gritty.

2478.53 -> Incontinence is a major issue.

2480.37 -> It's a side effect of the treatment

2483.49 -> and it was one of our kind of more embarrassing kind of transitions.

2490.49 -> The treatment also often causes gout, I should say.

2494.855 -> So, one place I found helpful was to go to this physiotherapist that are called

2499.16 -> pelvic physiotherapists who are good on incontinence issues.

2505.16 -> Second thing is, as I pointed out, is ER and the hospital are realistically

2511.29 -> the only time that the home care system is going to pay attention and try it.,

2517.05 -> I've taken a position that every time

2519.97 -> there is a hospital stay or whatever, I try and leverage that avenue.

2525.24 -> So, I go and try, and even if it's in the ER room,

2528.72 -> I try and find a hospital social worker to speak to.

2532.978 -> If it's in the hospital, I have had to deal with there's

2538.52 -> a lot of pressure on the hospitals and where we're going to send you.

2541.85 -> I tell the attending physician, I make a point of telling them

2546.177 -> that I would like to have a position of medical stability.

2550.037 -> The issue of being sent on when you're still in pain and everything else,

2556.047 -> and being left with this problem I've encountered.

2560.051 -> Money. That's a big issue. I think it's been alluded to.

2563.16 -> One of the ones that I worked on is,

2566.72 -> between us, trying to create a notion of how much money would be needed for me,

2572.09 -> as the second person after my wife has passed away, for my care.

2576.45 -> So, trying to create a point where at least the red flags go off that we're not all

2583.72 -> spending everything on one end or the other trying to create a balance.

2587.97 -> I've made a lot of use and I'm happy to talk about CRA disability and tax credits;

2596.48 -> accessing health benefits in retirement; making use of EAP as a retiree.

2604.41 -> COVID has come along.

2605.85 -> So that's been a big issue. That's something, another layer.

2610.225 -> Right now there is no infection control in home care services.

2614.37 -> So, very minimal.

2616.29 -> I've tried to go with the standards.

2620.72 -> Obviously if you have heart failure

2622.73 -> and lupus, COVID is going to be pretty significant.

2627.65 -> So, we've moved to using N95s inside. I've got a CO2 monitor which is a quick way

2636.93 -> of checking if there's enough air ventilation.

2640.65 -> They're online and if you have a reading of 800 or less, you're fine.

2646.85 -> If you're 800 to 1500, you'd better be careful.

2649.85 -> Above 1500, you know you have a problem.

2652.65 -> I've tried to use workers that work in the long term care,

2656.09 -> although I know it's a risk, but at least they have infection control there.

2660.97 -> I try and find people who are working with organ transplant people,

2666.068 -> because they're sensitive to the issues of COVID and heart failure.

2670.93 -> Next.

2672.53 -> Palliative care, which is the part that most of us probably aren't as familiar.

2677.53 -> I would just say don't leap into it too quickly,

2681.56 -> and you've got to do a lot of differentiation and the idea that you

2686.91 -> can get help to stay at home is unfortunately not available right now.

2692.77 -> There's not nurses and there's a significant shortage.

2696.04 -> So you're going to have to rely a lot on family and friends.

2700.379 -> Within the palliative system the key feature is,

2703.996 -> who is the power of care, that person holds some advocacy position.

2710.17 -> Be aware that a lot of long term care homes don't have palliative care.

2715.438 -> In the hospital, like the patient relations person,

2719.641 -> there are bioethicists that can help you,

2722.61 -> and where the ambulance goes is really critical at this point because

2728.05 -> different hospital systems have access to different facilities.

2734.2 -> Thank you.

2736.52 -> Just to point out at the end there's some

2738.57 -> slide illustrations of some of these points.

2742.48 -> Thank you so much, John,

2744.12 -> for sharing your experience that you and your wife have been through.

2747.44 -> You really did a nice job of outlining all the different challenges that you faced,

2751.44 -> but then some things you can do about it and it seems like you've learned so much

2755.12 -> through this and have a wealth of knowledge to share with everyone.

2757.57 -> So, we really can't thank you enough.

2759.73 -> Thank you to all of our presenters.

2761.89 -> A few people have shared some questions and I will please ask that our presenters join me

2768.533 -> back on the screen, and I'll go through some of the questions that came forward.

2774.325 -> So, you can keep them on coming in here and I'll work that out

2778.57 -> to make sure they can be asked to our presenters.

2782.61 -> One thing that came forward was

2787.33 -> one of our audience members said that she is caring for her mother who has had three

2792.45 -> episodes of heart failure and subsequent hospitalization.

2795.8 -> She is looking for recommendations

2797.41 -> on diet, patient handling techniques like helping her stand up, lay down,

2802.13 -> even some massage points or a workout regimen, something along those lines.

2806.83 -> Now I feel like this question could be to either, or to any of you, actually,

2811.37 -> but I'm wondering if maybe we might start with Dr. Moayedi.

2813.92 -> I know that you mentioned some ideas

2816.31 -> for who to reach out to if people do have a contact in hospital.

2819.93 -> Do you have some ideas of who else could help with that?

2823.24 -> Yes, so an incredible resource for heart failure is we make referrals to rehab.

2831.01 -> And so there's definitely benefits to going.

2836.45 -> There is an exercise physiologist, there is potentially a physiotherapist.

2843.29 -> Sometimes there's a dietitian in the circle of care.

2848.483 -> With COVID, we've seen that [inaudible 00:47:30]

2850.81 -> centres have become adaptive as well, so they do these sessions virtually.

2856.49 -> Some advice can be gathered from a referral rehab.

2862.09 -> While in hospital, if the care recipient was seen

2868.13 -> by a physiotherapist or an occupational therapist,

2872.29 -> the [inaudible 00:47:55] can also make

2876.77 -> recommendations for home. And through home care,

2879.85 -> they do have some alliances to provide some care at the home setting.

2888.09 -> So, probably the most important resource [inaudible 00:48:10]

2890.17 -> and then have been hospitalizations, then tapping into the physiotherapy,

2896.047 -> non-occupational therapy resources is an important one.

2901.04 -> Thank you so much for that.

2902.41 -> John and Cindy, did you have anything to add?

2904.81 -> If I can, I think the route we've actually

2908.69 -> used is there's community health centres in many parts of Ontario,

2914.114 -> and there's often a Diabetes education group in them that have dietitians.

2920.85 -> And so, a lot of the time there's a kind of prediabetic condition

2926.543 -> associated with some of these heart failure situations.

2930.95 -> So, that's been one of the avenues that we

2933.45 -> found very useful, to get every six weeks engagement.

2940.96 -> Nice. Thank you.

2942.89 -> Cindy, did you have any other further comments?

2945.85 -> I agree with what John and Doctor Moayedi have mentioned.

2950.92 -> I think when it comes to getting home care

2953.05 -> or we have a referral, it's important to also make sure that as

2958.24 -> a caregiver, let the doctor know that maybe because of your culture,

2962.33 -> for example, for my father, he wasn't open about having anyone entering his home.

2969.09 -> Home is a very private place for the Asian culture, for us.

2973.29 -> And just making sure the doctor knows so that the healthcare team push

2977.24 -> and articulate the importance of that so that then the caregiver can send

2983.64 -> the effort to then speak to the importance and just keep reiterating that message,

2989.81 -> to overcome that cultural belief that I don't want anyone in my home.

2994.53 -> I don't need rehab. I'm a strong alpha male. I take care of my family.

2999.21 -> To overcome that cultural barrier.

3003.274 -> Thank you. Definitely some considerations to keep in mind, for sure.

3007.92 -> So, some other questions here we have is,

3011.29 -> one of our participants is asking if you could understand, sorry,

3014.97 -> explain preserved ejection fraction that was mentioned at some point.

3020.01 -> Yes, so I can field that one,

3022.41 -> and I'm sure John could speak to his experiences as well.

3026.53 -> With the classification of heart failure,

3029.73 -> we divide heart failure into a weak muscle.

3034.05 -> So heart failure with reduced [inaudible 00:50:37]

3037.595 -> and then the opposite is where the actual muscle is okay,

3041.663 -> but the heart is stiff.

3042.85 -> And the reason we [inaudible 00:50:44] heart failure

3045.37 -> into those two classifications is because the treatments are different.

3050.01 -> And so when we refer to the weak muscle, there are four

3055.37 -> classes of medications that we prescribe. Whereas in the stiff heart,

3060.65 -> we're only starting to now see medications that are potentially effective

3065.47 -> in the treatment of heart failure with preserved ejection fraction.

3070.09 -> So the reason for the classification is really because of treatment.

3075.2 -> And then when you talk about the different

3077.29 -> causes of heart failure, that results in a list of different

3082.45 -> reasons why the heart is either stiff or weak.

3086.77 -> Does that explain things?

3088.84 -> Yeah, I think that really helps. Thank you.

3091.24 -> There were a couple of questions on that.

3092.89 -> That's perfect.

3096.72 -> The next question, it's actually more of a comment.

3099.57 -> There were a few comments

3102.24 -> about how people are having a really hard time finding that financial support

3106.64 -> for the person that they care for and for themselves.

3109.12 -> So, we know that that can be a huge challenge,

3111.483 -> and we did talk about that a little bit already.

3113.56 -> The one thing that came forward, though, is that they're finding that heart failure

3117.61 -> stage three isn't recognized as a disability.

3120.24 -> And so they're having a really hard time working through the system.

3122.81 -> Now, we do have a CRA webinar coming up later this month,

3126.619 -> so maybe that's something that we can provide more information on there.

3130.93 -> But I know, John specifically, you did talk about some ideas that you had

3135.64 -> for making your way through a bit of that system.

3137.8 -> If there's just like even one main tip that you could suggest,

3140.69 -> and this is something that we can look at for a later webinar as well.

3145.77 -> So, to get the disability credit, there's a special form the doctor has to fill in,

3151.693 -> which is basically about functional disabilities, not about medical disabilities.

3158.49 -> The main trick there is at the back is a place you can say even though

3166.45 -> you can still walk, or you can still use toilets or shower,

3170.85 -> but together they're enough to make it functional disability.

3175.85 -> There's a box at the back that kind of the doctor can use to build a case

3181.09 -> where there's partial things going on, but that you actually qualify.

3185.17 -> So that's a tip there. Okay?

3188.295 -> Thank you. That's super helpful.

3192.56 -> It may be helpful to clarify that we don't

3195.93 -> really have a stage three of how symptomatic patients can be.

3203.05 -> So, what John was alluding to with the functional limitations.

3206.45 -> And so that's really bringing to

3210.01 -> the classic or Cart Association classification system.

3215.49 -> So, class one aren't symptomatic at all, and B is where patients are significantly

3222.65 -> more symptomatic, where they can't do that

3225.33 -> two sets of stairs that I was referring to in my slides.

3229.97 -> So, the more symptomatic the patient, the higher the class functional limitations.

3236.12 -> Thank you again. That's great.

3239.16 -> I'm just going to squeeze in one more question before we start to wrap up,

3242.41 -> because we do have another minute or so, but there is a question about how strict

3247.2 -> do you really have to be with those fluids?

3249.17 -> And I know you said the amounts earlier today, but the other part of the question

3253.21 -> is what is normal when it comes to weight gain, weight loss, day to day?

3257.89 -> Is there a range that's pretty acceptable there?

3263.12 -> We recommend less than two litres a day.

3267.491 -> If we're going to be really strict, it's 1.5 litres.

3272.266 -> And sorry Felicia, what was the second part of that question?

3275.8 -> They were just asking if there's

3277.67 -> a normal range for weight gain or weight loss day to day.

3280.72 -> Perfect. So generally we say that, you know,

3283.17 -> within 24 hours, your weight should not go up by 3 pounds.

3287.73 -> If your weight [goes up] 3 pounds, that's fluid.

3292.57 -> If you're in a platform like Medly, you'll have clear recommendations as

3298.75 -> to what to do if your weight does go up in that 24 [hour] period.

3303.69 -> So, the general rule of thumb is 3 pounds in 24 hours.

3309.36 -> Great. That's super helpful.

3310.85 -> I think it definitely gives people range to look out for.

3314.45 -> So, we are at the end of our Q and A,

3316.72 -> and the end of our webinar.

Source: https://www.youtube.com/watch?v=xNTyP7dNjvw