Are you one of the many family caregivers who juggle a job while caring for a loved one with dementia? You're not alone! This episode explores the challenges you face and offers helpful strategies to manage your work and caregiving responsibilities.

Are You One of the 60% of Dementia Caregivers Still Working Full Time?

0:05:02 When Crisis Strikes: Navigating FMLA
0:08:51 Impact of Caregiving on Employment
0:13:01 Balancing Roles: Juggling Work and Caregiving
0:15:11 Breaking the Silence: Advocacy for Caregivers

The Impact of Caregiving on Employment

Caring for someone with dementia can significantly impact your work life.
Here's how:
Schedule conflicts: You might need to come in late or leave early for appointments or unexpected situations.
Reduced productivity: Worrying about your caregiving responsibilities can make it difficult to focus on work.
Increased stress: Juggling work and caregiving can be stressful, affecting your health and well-being.

Strategies for Balancing Work and Caregiving

Here are some tips to help you find balance:
Be proactive: Explore flexible work options like remote work or part-time schedules. Consider using Family Medical Leave Act (FMLA) benefits when needed.
Plan for the future: Since dementia progresses, you might need more support in the future. Research adult day programs and respite care options.
Advocate for yourself: Talk to your employer about your situation and explore flexible work arrangements. You can also be an advocate for changes in workplace policies to support caregivers.

Breaking the Silence: The Importance of Advocacy

Many caregivers don't talk about their situation. This silence makes it harder to get the support you need. Here's why advocacy is important:
Increased support: By speaking up, you can encourage employers to offer more support for caregivers.
Change in legislation: Advocacy efforts can lead to changes in laws that benefit caregivers.

You Are Not Alone: Building Your Support System

Dementia coaches: A dementia coach can provide guidance and support to help you navigate the challenges of caregiving.
Support groups: Connecting with other caregivers can help you feel less alone and share experiences.
Friends and family: Don't be afraid to ask for help from friends and family members.
Remember, you don't have to go through this alone. There are resources and support systems available to help you.

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The Dual Roles of Dementia Caregivers

[0:02] Are you one of 57% of family caregivers that have reported that they come into work late and they leave early because of their caregiving responsibilities?

If you are, you're not alone. Today's episode of Dementia Caregiving for Families, episode 94, is talking about what what it means to be one of the 60% of dementia caregivers who are still working and what you can do to help yourself through this process.

So buckle up, listen to today's episode and walk away with at least one strategy that you can implement to make your dementia caregiving journey easier for yourself as you are still working.

[0:56] Hey there, success seeker. Welcome to Dementia Caregiving for Families.

Do you feel overwhelmed with the daily struggle of dementia caregiving, looking for an easier path?

You're in the right place. On this podcast, we teach you the skills to simplify caregiving.

We unravel the mystery of dementia and guide you through the often difficult behaviors.

I'm Lizette, your host and fellow family caregiver.

As an occupational therapist, I bring my professional and personal experience to this community. Here we speak the truth, but without the verbal vomit.

I know you will find value in today's program, so buckle up while this flight takes off.

[1:51] Are you one of the 60%, yes, that's 60% of family caregivers of a person living with dementia that's actually still working?

And did you know that of 60% of family caregivers of a person living with dementia, did you actually know that most of those work about 35 hours a week?

Or are you one of the 18% of family caregivers of somebody living with dementia who was still working that had to cut back on the amount of hours that you work in order to do your caregiver responsibilities? responsibilities?

Or are you one of the 57% of family caregivers that report coming into work late or leaving early because of their caregiving responsibilities?

[2:47] Let me tell you a quick story of a couple of years ago when my dad got super sick and ended up in the hospital at the tail end of COVID, it propelled me into being one of those 60% of family caregivers that actually still work 35 plus hours a week.

But what happened was he was in the hospital. He's my mom's 24-hour primary caregiver.

And I had been playing ostrich. I had my head in the sand.

I wasn't really paying attention to the fact that my parents were teeter-tottering on needing assistance and help.

And so when he ended up in the hospital, I was thrown into the crisis mode related to becoming a family caregiver overnight, and it was not fun.

And I remember struggling as a family member trying to get my FMLA, my Family Medical Leave Act.

[3:52] Enacted so that I could actually take time off.

I had to fight with my dad's primary caregiver.

I'm sorry, yeah, his primary caregiver, his PCP, his primary care physician.

I had to fight with him. The conversation went something like this.

My sister had been there. My sister had to go home.

I now had to come step in. My husband was going out of the state.

And so somebody had to be with my mom and dad 24 hours a day.

So I reached out to my dad's primary care physician and said, will you please sign the FMLA paperwork?

And my dad had been in the hospital. He had been discharged from the hospital. hospital.

However, the family care doctor hadn't seen him yet, and I needed family medical leave.

And his primary care physician said, no, I'm not signing the paperwork.

[4:47] And I kind of, my jaw dropped. I'm like, what do you mean you're not going to sign the paperwork?

Well, I needed to discuss it with you first. We needed to see your dad before we could come up with that as a solution for you to be able to take family medical leave. this was a crisis.

When Crisis Strikes: Navigating FMLA

[5:03] Like if I had planned it, I would have asked you beforehand.

I would have made an appointment. We could have followed the rule set that you have delineated out for this process of getting family medical leave, which is my right as a person working in the United States to be able to implement that at any time.

But we were very blessed with the fact that my dad was actually going to see one of his other physicians and I just took the paperwork with and I begged him.

I'm like, I need to be able to take time off to be with my dad.

I was asking for two weeks.

I wasn't asking for 13 weeks. I wasn't asking for the maximum.

I just needed a couple of weeks until my husband got back for me to be able to be at home and actually help my dad.

So I turned into that family caregiver that had all of a sudden needed to figure out how to navigate both working full-time as a family caregiver, as well as taking care of my caregiving responsibilities.

[6:15] And I just want to tell you that if you are in this position.

[6:22] I hear you. I see you. I've been you.

I'm still you. Even though I'm not working for a quote unquote employer anymore, I am working full time and I am a family caregiver of a person living with dementia.

I work 35 plus hours a week on this business, serving family members just like yourself.

But I know how overwhelming it can be when you have a job that requires you to have certain hours, certain times that you come in.

It can be daunting. And I see you and I hear you and we're here to help you. You are not alone.

There are 60% of family caregivers that are are actually still working 30 plus hours a week. So you're not alone.

Many people are navigating this and I want us to try to figure out a way to make it a little bit easier for you.

So the first thing we're going to talk about today is the impact of caregiving on employment.

[7:32] Most of us don't think about how being a caregiver is going to impact us or how it it impacts our employer, right?

But what are some of the common signs of things that are impacting you as a employee, but as well as the employers?

So on the whole employment system, did you know that caring for a person with dementia doesn't have to be this hard?

If you are struggling and you would like to join our next free workshop.

The topic of the workshop is Three Tips How to Avoid Challenging Dementia Behaviors Without Stress, Anxiety, or Burnout.

I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know now after attending this free workshop.

If you'd like to register, message me the word.

[8:44] Workshop on Instagram or check out the link in the show notes below.

Impact of Caregiving on Employment

[8:52] What are some of the impacts?

Number one, family caregivers come in late or they leave early because they have to take somebody to the doctor or they have to go pick up medication before the pharmacy closes or you're struggling to get the oxygen, and you have to go from one provider to another, and you have to go drop something off and pick something up at a different place.

So it results in, for the employee, reduced hours and needing more flexibility so that you can meet these needs.

[9:30] But on the side of the employer, it also, if the employee isn't able to plan it and schedule it, it means that That sometimes the employer is struggling to find a way to cover the shift or provide the services that they are trying to provide to their customers because it's modified the hours.

But having all of these responsibilities and additional roles on you can increase a family caregiver's stress levels, right?

It's hard to juggle all the responsibilities of being a wife, of being a mother maybe, of being a daughter, of being a church member or just a normal human being who wants to have some balance in their life.

It is very challenging to manage all of those roles and responsibilities responsibilities that each of us have.

We don't have just one role, right? We have multiple roles.

We have employee, we have friend, we have chicken mom, we have all of these different roles and responsibilities that we have together.

[10:44] In everyday life, whether it's just living normal life or whether it is as a family caregiver.

But when you're juggling all of these different things and trying to work, it can be very stressful and it can increase your stress levels.

But the other side that also happens is when your stress levels go up like that, it actually can decrease your productivity because your brain Rain is focused on some of the things that you have to do in order to be the caregiver.

I know for me, like some of the tasks that I'm constantly juggling in my head are, okay, mom and dad's medication have to be picked up on Thursday this week because mom's eloquence is finished and I have to get it in her med box by Saturday night because I ran out.

Or my dad normally who doesn't drive anymore.

[11:40] My dad normally gets a ride from a friend of his who's having eye surgery.

My husband and I downsized so that we only have one car because we want to keep our costs low so that I can start this wonderful business serving you in a different capacity.

[12:01] And we only have one car. So my dad's car was taken away by the evil child because he wasn't safe to drive anymore.

And now we have my dad who gets a ride from somebody in his neighborhood who's having eye surgery this week.

Well, I have no control over his friend having eye surgery this week.

However, my husband who needs the car this week is actually going to be out of town until Thursday afternoon.

So now I'm juggling that responsibility in my head, trying to come up with a plan so I can take my dad grocery shopping this week, but I've got appointments and all of these things, right? You guys know, right?

But what that resulted in is a decrease in my own productivity this week, because I'm juggling some of this responsibility.

And it's taking up brain space.

And I don't know about you guys, but there's only so much brain space up in my head, right?

Balancing Roles: Juggling Work and Caregiving

[13:02] Most of us, when stress comes, thinking goes, right?

And then sometimes, and this is something I think happens more frequently than we have any idea.

But employers do not know that that their employee is actually a family caregiver.

We don't talk about it. Something I find striking, and the more I do this, the more I realize this to be very true is.

[13:29] People do not talk about the fact that somebody they love has cognitive impairment, and that is something that we have to change.

It is not something to be embarrassed about that your family member has dementia.

[13:43] Nobody chooses to go down this journey and get a dementia diagnosis.

Nobody chooses it. It is nothing that they have done to themselves.

It is not their fault that this is going on. But society has put such a stigma on dementia and cognitive impairment that we do not talk about it.

One out of three adults over the age of 65 have some form of cognitive loss.

That's a third of people living over 65.

If you go to church, just look around your church. Just look in the congregation and see how many people in your congregation might be over 65.

One out of three of them have some form of cognitive loss.

So now you're just somebody sitting in the pews and you don't have 60 people that are over 65 years old in your congregation.

Well, guess what? Those people are the family caregivers.

The people in your community, One out of three of them are probably a family caregiver to somebody with cognitive loss.

But how many of you guys actually know that? How many of you guys have actually spoken to people and said, I'm helping somebody living with dementia?

[15:04] Or even I'm helping somebody with congestive heart failure or COPD or all of these other things.

Breaking the Silence: Advocacy for Caregivers

[15:12] We do not talk about the fact that we are family caregivers.

We cope, right? The analogy that I've used before is when somebody becomes a caregiver, typically at the beginning, it is a slow and tedious process.

It's like the frog being dropped into cold water on a stove that's slowly heating up.

And we adapt because we're humans and we adapt and we adapt and we adapt.

And pretty soon the water is boiling and we are in crisis mode and we have turned into a boiled frog, proverbially. because we didn't talk about it.

We didn't tell people what we were going through.

We didn't plan for it ahead, which is next episode that we're going to talk about planning because we don't tell.

[16:02] Our employers that we are struggling. We do not tell our employers that we are a family caregiver.

I don't know if it's because we're embarrassed or we don't want there to be an awareness that maybe I'm taking time off because I'm not telling them that the time I'm taking off is for a family member.

So it does have an impact on employment.

It has an impact both on the employer as well as the employee.

[16:33] Now, the second thing we're going to talk about today are some strategies to help you balance your responsibilities as a family caregiver.

So a couple of things you need to consider.

You know, if you are loving a person living with dementia, the reality is, and I'm sorry if this is your first episode with me, I'm not saying this from an unkind or not caring perspective.

[16:59] But the reality of the matter is that if you are helping somebody living with dementia and they live long enough, that they will require 24-hour care.

That's the end of the conversation. We don't say that often.

We don't talk about that with people as a healthcare system.

It's implied that people would actually know this, but many people do not actually realize that when you say somebody has dementia, this will require 24-hour care for their safety and for other people's safety if they live long enough with this process. End of discussion.

So if you are helping somebody living with dementia and you're early on in your journey, you have to start to plan for that.

You have to start to explore flexible working opportunities, opportunities, flexible working situations, maybe telecommuting, working from home, maybe reducing your hours and going part-time, maybe looking at Family Medical Leave Act or FMLA and seeing how you can use that intermittently in order to meet the needs of the person that you are helping.

[18:18] But not addressing this earlier on will result in it being very stressful when it happens that you all of a sudden need to provide 24-hour care.

So I beg you to consider just starting to research it, starting to look at what your options are, starting to look at where you are in your own life planning related to being a family caregiver.

Because if we are active in this process, if we are proactive as a family caregiver in this process, it is easier.

It is significantly easier than just waiting to become a boiled frog.

It's not fun. We all are going to, at some point in in this process, deal with the crisis that is inevitable, but there are so many things that we can do, to set ourselves up for success.

[19:22] In this process by being proactive. And being proactive about being a family caregiver who is still working can be so beneficial to you.

You can start to consider things like exploring getting a dementia coach like myself.

I do two levels of dementia coaching. I do one-on-one dementia coaching with families, and I do a low-cost group coaching program because research has shown longitudinal support over time is what significantly helps decrease caregiver burden and stress.

So if you haven't listened to episode 92, I invite you to go back and listen to episode 92, which was how to decrease your stress as a dementia caregiver through dementia coaching.

[20:14] So looking and being proactive about building support, using a dementia coach, finding an adult day program, looking at your respite options, finding intermittent support or caregiver assistance through your church or volunteers or those kinds of opportunities that you will will have to create for yourself because it's an unrealistic expectation to expect that somebody needs to recognize that you need help if you haven't actually told them that you need help.

I'll never forget, I was speaking with a family caregiver and one of the things that came out in the conversation was she's like, well, nobody offers to help me.

But the flip side of that is she's not asking for help.

She's not being specific about what she needs help with.

[21:14] Her expectation was unrealistic of her friends to just be anticipating her needs.

That is not a reasonable expectation of anyone.

That's not a reasonable expectation in our marriages.

If you are married for more than five minutes, you know sometimes the person that loves loves you the most in the world, doesn't always pick up that you need help and that you actually have to ask for help. You have to ask for what you need.

So if you are a family struggling and you have support people around you, you have to be specific about what it is that you need.

You have to be specific about, I need help with somebody coming to sit with my mom for four hours every Wednesday so I can go to work because that's the time I don't have somebody who can stay with her. You have to ask.

So the third thing we're going to talk about today related to being a dementia caregiver that is still actually working is being an advocate.

[22:18] We do not talk about advocacy enough. We need to be an advocate on so many different levels.

We need to be an advocate with our employers related to what it means to be a dementia caregiver.

What we need as dementia caregivers, we need more flexibility.

We need support. We may need support in our jobs. We may need support for an employer to actually hire dementia coaches to help their employees come up with strategies and solutions.

[22:52] We need to be an advocate with our state and federal laws related to dementia and dementia caregiving.

We need to be active in looking for solutions.

Solutions maybe those solutions aren't going to help me today but maybe those solutions are going to help somebody further downstream coming through this process a little bit after me because if if we're not advocate advocating for ourselves who's going to advocate for us so our employers don't know because we're not advocating for ourselves why because we're just calling out sick Did you know that caring for a person with dementia doesn't have to be this hard?

[23:44] If you are struggling and you would like to join our next free workshop, the topic of the workshop is three tips how to avoid challenging dementia behaviors, without stress, anxiety, or burnout. now.

I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

If you'd like to register, message.

[24:24] Workshop on Instagram or check out the link in the show notes below.

Possibly because their rule sets set up that way. Well, then we need to advocate for them to change their rule set.

We need to band together as family caregivers and actually work together to try to change things related to dementia and dementia caregiving.

So advocacy at work, advocate for yourself, Advocate for the rules that you work to change.

Be an advocate for the Alzheimer's Association or find out how you can be an advocate in your state in order to actually change some of the legislation related to caregiving.

Because we all are in this together. You are not alone.

Like I said, 60%, 60% of family caregivers are still working 30 plus hours a week. That's 60%. That's a lot of people that are still working as family caregivers.

So just to recap today's episode, we talked about caregiving, the impact of caregiving on an employment situation.

We talked about strategies to help you balance your caregiving responsibilities.

[25:42] And then we talked about advocacy. Advocacy is something very near and dear to my heart.

I have been an Alzheimer's Association advocate for probably two years now, maybe three.

And I, you know, it doesn't take that much time. They send me texts and ask me to do something.

Earlier this morning, I got a text and the text said, hey, will you help us do this?

Click on the link, fill in my name, my email address, the whole nine yards.

It pre-populated the email already to the representatives.

All I had to do was read through it, make sure I didn't disagree with anything.

I added another little section and then I.

[26:22] Pressed submit, and it submitted it. And I was just an advocate related to paying for dementia and dementia caregiving.

Took me three minutes maximum. So we can be advocates, we can be advocates for one another.

So those are three strategies related to being able to help family caregivers who are still working, how you can help if you're one of the 60% of family caregivers is still working.

Now, yet again, since we're still in March, I'm going to invite you that if I resonate with you, if any of the episodes that I have shared over the last several months have resonated with you, if you are ready to go deeper into a relationship with me where I can walk with you through this process.

We are in the last few weeks of the Founding 54 Families for the low-cost group coaching program that I am starting for family caregivers of people living with dementia.

[27:30] The program doors related to the early adopters and the people who are founding members of this group, which come with a lot of benefits, ends on the 31st of March.

The biggest benefit that you get if you join by the 31st of March is that you will have for the lifetime of the person that you signed up for.

So if you have two parents, you have to have two different subscriptions.

It's a low-cost group coaching program. I have to do it that way.

But if you have one person that you're supporting for a one-time investment for the lifetime of the person that you were supporting, whether that's a year or two or 10.

[28:17] I promise to walk with you as your dementia coach to help you be proactive, come up with solutions, teach you to speak dementia, be your lifeline, help you through this process because you do not need to struggle alone.

The evidence-based practices show that you can decrease a caregiver's stress, and that is what we work on in this program.

It is one focus, and that is you as the family caregiver and what we need to do to decrease your stress levels.

So if I resonate with you, you've only got another 11 days.

March 31st is when the Founding 54 closes, and then it will be an annual subscription for whoever joins after that on April 1st moving forward, which is still going to be a tremendously good deal.

It's just not as good a deal as the Founding 54.

I have 10 families as of today's recording.

I'm doing another workshop in a little bit. I will have another workshop between now and the end of March.

So if you're on the fence, join the workshop.

[29:33] If you're even further on the fence, reach out to me.

I'm not opposed to hopping on a call and talking to you about this.

But if I resonate with you, in the show notes below is the link for you to actually join the program.

It is not a $10,000 investment.

It is a low-cost group coaching program. So I invite you to consider it.

It's definitely a wonderful opportunity on the ground floor.

You can help tailor this program.

So stop delaying and hop on board right now. You've got 11 days left.

They're going to go quick. and so thank you for listening to today's episode and next episode we are going to be talking about, planning ahead so we are going to plan ahead for our next episode which is talking about planning ahead have a wonderful day and thank you for listening.

[30:30] Thanks for joining me today success seeker i pour my heart and soul into this program to serve you You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families.

It's a positive and proactive space to navigate dementia caregiving together.

Get practical tools and find support, but without the verbal vomit.

It. Be a part of our community where we seek to find peace of mind and ease despite the dementia diagnosis.

So join today and see you next time as our flight takes off.

Subscribe To Dementia Caregiving For Families Podcast

If you feel like dementia caregiving is hard and unpredictable and you are struggling to help a spouse or a parent living with dementia, join our next free workshop.

Join our Facebook Group at: 

Become a  Member of Our Exclusive Program!

Subscribe To Our Newsletter

About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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