Consuela Marshall 11/18/24

(This interview has been edited and condensed for length)

Zack:   Tell us a little about yourself and what you do?

Consuela: By profession, I am an occupational therapist. I've been working as an

occupational therapist for 30 years. For the majority of my professional career, I have

been in the role of a home health therapist, which means I enter the homes of those

who are returning from a hospital stay or even a doctor's visit where it has been

identified that there are some weaknesses and that person has lost the ability to ...

take care of themself or is having mobility issues.

I've done this for 25 years and I love it because I get to see people in their natural

environment and... get the real story of what's going on in their lives. And I can now

say that initially, in that role, I was very narrow-minded....I had a limited view of the

aspect of caregiving....I was missing something for several years as a therapist, a

component you can only know after you’ve been in a caregiving role. I gained a much

broader perspective of the challenges that caregivers face when I became the

caregiver to my mom.

But... step back further than that, the reason why I became an occupational therapist

is I had a daughter born with physical limitations.... The caregiver term never even

entered my mind back in the beginning stages of her care. I was just a wife, a mom

who had just had her second child and just seeing the whole world ahead of me and

my husband, and we having all these great plans for life together. And then my

daughter comes along.... It was not the scenario that we had hoped for, but it thrust

me into the role of being a mom of a child with a disability, never realizing I was a

caregiver.

Zack: How is your daughter doing?

Consuela: Oh, she's great. She's independent somewhat. I'm still in a caregiving role,

but she lives in her own home, n`ot too far from me. I am continuously providing some

support for her and overseeing things.... I'm still tethered to a lot of her life... still

operating in a less hands-on caregiving role....

Selma: How does your occupational therapist background, help you move forward

through the caregiving space?

Consuela: Let me start by defining what occupational therapy is and what we do. And

by first defining what that word occupation means. An occupation is anything that you

need to do in your life, to have the best quality of life. And as we all know, having a job

is an occupation because without a job, we don't have the best opportunity to have the

best quality of life. But that definition of occupation goes beyond that. The focus for

occupational therapy is the occupation of living.... Often those are ADLs and IADLs,

those activities of daily living, instrumental activities of daily living... that we individually

have to learn to do to be self-sufficient and have the best quality of life. So as a trained

OT, that part of me was well-versed and well prepared for the role of going into homes

and teaching those who've had injuries or disabilities how to regain those skills and

how to modify how they will go forward in the event that they have permanent

disabilities.... That is where occupational therapists come in.

The initial missing component for me was that emotional part that is attached to that

physical part of caregiving. Early on in my career, I would go into homes and when I

would teach the caregivers... I was so tuned into only teaching them to do transfers or

teaching them how to assist with bathing, teaching them how to assist with dressing...

but I overlooked the emotional part. I didn’t realize that the emotional stress, the feeling

of them losing their own identity... it played a big part in how they were able to

physically support their loved one.... I didn’t understand how that emotional piece

overrides all the other things. When I became my mom's caregiver... the light bulb

came on... I saw why I wasn't helping them as much as I thought.... It was like I was

giving them something else to do, instead of having that empathy for what their needs

were. Even though technically I was teaching them a better way to address a certain

task or a situation, it wasn't packaged properly.

Zack: Were you working your job when you became your mom’s caregiver?

Consuela: Yes.

Zack: What were two or three challenges you could share with us during that time you

were working and caring for your mom?

Consuela: The good part of this whole thing is the flexibility in my schedule because I

was a home health therapist. I could create my schedule for when I saw my patients.

Now, it wasn't easy.... I had to lower my caseload. I could not see the volume of

patients that I was accustomed to seeing. I had to always juggle my work days to

accommodate what days I could get a caregiver. And if they didn't show up to work, I

would have this caseload of patients I was scheduled to see that I had to cancel. Most

times, I had to make phone calls to patients and say... I need to reschedule for another

day.... Those were a lot of the challenges that I had, in caring for her.

Zack: You mentioned you get to go into homes. You really see what's going on versus if

your patients came to a facility or came to an office. Can you share a couple of other

challenges that you saw maybe other families were having?

Consuela: The challenges I saw really sparked me into wanting to start my business --

Finding a Foothold. It's really seeing the ongoing stress and the ongoing problems that

I saw in the life of the caregivers. As a therapist going into the home, almost

immediately, especially in those who are new to caregiving, after their loved one had a

sudden downward spiral in their health due to an illness or injury, often one of the first

thing many caregivers would ask me as I’m entering the door as a therapist is “How

soon do you think I can go back to work? Do you think I could go back to work on

Friday?” And I'm like, “Well, let me take a look. Let me take a look at what’s going on

and see your mom first.... And they're already saying, “I've already been off work two

weeks because I had to sit in the hospital with my mom, and I'm out of PTO. I've gotta

be back at work on Monday. I would see people quit jobs and be home and worry

because they no longer have an income. The financial challenge that caregivers share

is a major thing.

Also, another thing I see is the the fact that many families don’t have a plan. Many

don’t know how to set in place a plan that needs to work for everyone. Not many

people are prepared for integrating caregiving into lives that are already busy lives.

And the biggest plus of going in the home, is seeing the setup of the home

environment...what type of equipment is needed and being able to see the challenges

they face... seeing where they are working too hard on everyday tasks and seeing what

things keep the patient from being as independent as possible and seeing things that

put the patient and the caregiver at risk for falls and injuries.

Zack: Thanks for sharing that as well. So many memories were flashing as you were

talking because I did home care for 13 years and I agree with you. I used to see very

much the same and get asked the same question. Can I go back to work?

Consuela: I'm also seeing my life demonstrated in their life. Often just saying, “Let's

take this one day at a time.” Because my goal is to really get them to be realistic....

Selma: Do you at all get involved with the emotional challenges of the care recipient?

For example, where an individual was totally independent and has a life-altering event

that limits them from performing their activities of daily life? How do you overcome that

emotional challenge?

Consuela: Depends on the role that I'm playing. In my occupational therapist role or

coaching role, when I'm in the home with the patient or online, I'm having those private

conversations with them and trying to express to them that this is a change for

everybody. And it's understandable to have these feelings of loss. So making that

connection with them and saying that I do understand what you're feeling and that you

may feel like you don't have control anymore. But in order to move forward and make

gains, we have to really have you see things from a bigger picture than your loss.

Because if you get trapped there, it's going to impede your progress. So really having

those conversations and addressing those directly with the patient.

Now on the flip side of it, also having those conversations with caregivers that force

them to see their loved one’s... viewpoint also but also having them to know that they

may not be able to fix every problem and that it is ok. So, I have conversations on both

sides. I’m always trying to keep the channels open where there's a two-way

conversation, that the caregiver is allowing input to be given by from the one who

they're caring for and that the care recipient understanding that the caregiver has

limitations and has a say in how they can provide the care.

Selma: That's great. And it's not easy. You're kind of like the bridge that brings them

together.

Consuela: That's the part I had to learn through my mom.... My mom was accustomed

to her timing, the way that she did things. And when I brought her into my family where

I had two young boys, a husband, a daughter who I was already supporting, and my

mom wanted things done her way. She was accustomed to getting up at this time, and

she wanted her shower at this time. All in the middle of preparing for carpool drop off

time, finding homework, getting ready for work, Asking if the kids put their gym shorts

in their bags? All these things were going on in my head, and where are my keys and

all of this. And my mom was standing by the bathroom door saying, “I’m ready to take

my shower.”

Zack: How did you do that and try to hold down a job?

Consuela: I had to go back to what I knew to do, and had to stop trying to always

please my mom. I’ll tell you a backstory —In my role as a therapist, I entered a group

home setting for the elderly, and I loved it.... And then I drove around just thinking

about that group home for years. It was a residential home.... It was a house for eight

residents and I fell in love with it. It was, two or three caregivers, at a licensed in

residential home... At this point my mom had already had her 1st stroke, she stayed

with me a couple of months, was better and she went back to her house.... I knew I

needed a plan, what was going to happen if my mom got sick again.

So, I did the research, it took a couple of years and I opened a residential care home....

It was licensed for 6 elderly residences. The whole goal was for my mom to come and

be a resident there. That was the whole point of it... unfortunately she did have another

stroke and could not return to her home but she didn't want to go live at the residential

home, to be honest, she wanted to go live with my sister who could not care for her. I

was hurt. “I'm not one of them. I'm your daughter.” So that's the part I don't really like

to share about because ... emotionally, I couldn't tell my mom “no.” So I brought her to

my house. But when it did not work, it was too much, I brought her to the residential

home where I had a staff, help. This is the part that I share with my groups, that just

because as a therapist or you as a daughter or a son can do things, it doesn't mean

you should.

Selma: That was great because there were two important things I think people need to

hear as caregivers, which you said in your story. First, it's okay to say no. You can't do

it all. And second, remember to take care of you and sometimes saying no is taking

care of you.

Zack: This is one of my favorite questions, if you were to go back to the young

Consuela before all this started happening, what are a couple pieces of advice you

would give her as far as preparing for the caregiver journey?

Consuela: One, have some non-negotiables in your life when you are going into the

role.... things that you hold dear to that you don’t let caregiving rob you of, those

things may have to look a little different but they always remain in your life.....And

number two, keep learning. Don’t settle for what you already know, learn how and

when to pivot quickly when things are more than you can safely bear, this involves

reaching out to others.

Selma: Just quickly, we talked a lot about the challenges of caregiving. When you look

back on caring for your mom and your ongoing journey of caring for your daughter,

what is it that gives you joy?

Consuela: Knowing that I am forever changed... I am a better version of who I could

have ever been because I was a caregiver....I've look at every opportunity of caregiving

as a way that I've been enriched.... I would do it all again, but there are some things I

would have done differently. I know who I am now is a product of having been in the

trenches, done the hard work, and made changes that allowed me to keep seeing the

little light, in the little moments, that were sparks that kept me coming back. You know,

all those things you don't get if you're on the outside looking in.... So, I'm just grateful

that I had the opportunity to be a caregiver.... And that's what I'm hoping that other

caregivers can grow to see, that this is an enrichment journey for everybody involved.

That's awesome. Thank you. Thank you so