Latest / The Eye Believe Podcast / My 15 Years | Episode 14: Being a caregiver when YOU need a caregiver

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My 15 Years | Episode 14: Being a caregiver when YOU need a caregiver · The Eye Believe Podcast

0:05
hey everyone
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welcome back to Melody's 15 years
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and today we're going to talk about
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what it's like to be a caregiver
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when you also need a caregiver
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so welcome back to the podcast melody
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thank you
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so that's a unique situation
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to be a caregiver and need a caregiver
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let's dive into that a little bit
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explain a little bit about your situation
0:29
when you were being a caregiver tell us about that
0:34
well when I was first diagnosed
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I did have basically a caregiver
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I had a husband who was somewhat attentive
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and able to help me out
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in the very early diagnosis stage
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but then um
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my mother ended up coming into the picture
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with dementia she had been living close to us
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when I was diagnosed
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so I was used to kind of taking care of her
1:00
making sure that she was okay
1:02
but then as her dementia progressed
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she needed more and more care
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so I ended up losing my caregiver through a
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a divorce separation
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divorce and became a full time caregiver of my mother
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which was a situation I never really expected to be in
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and
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you know I tried to be the best I could for her
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but I was also needing something that I did not have
1:30
yeah absolutely
1:32
and especially with dementia
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because that's a full time
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it's like a toddler you know you
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it's not just helping it's like
1:40
full on caretaking
1:43
yeah and she had a she was hospitalized once with
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she had an accident she fell and broke her pelvic bone
1:48
so then she was put into a rehab
1:51
um so it was back and forth to the rehab
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she was in Virginia
1:54
I was in North Carolina cause she had the fall at your
1:57
your house um
2:00
so you know
2:01
it was it was a lot of moving pieces
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and then bringing her home she
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you know it was
2:05
it was you know
2:06
trying to to coordinate everything
2:09
while still coordinating my routine scans
2:13
and my care for ocular melanoma and other things
2:18
and then also keeping her and her dementia
2:25
care under control
2:27
so there was a lot of moving pieces with that
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and she just kept progressing and progressing
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and then she ended up getting a stage four
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lung cancer diagnosis
2:37
so then it was trips to the doctor for that
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it was her radiation it was her um
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hospital stays and and so on that she needed
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so then it became she was my full time job
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and my care got pushed to the back
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and I wasn't
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um I wasn't supported
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but I also wasn't able to keep up with my care
2:59
that I needed
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because I didn't have anybody to watch her
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so I could go to the doctor
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so it was kind of this real complex situation
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over the course of
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off and on um probably 10 years
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it's a long time
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so let's talk a little bit about the kind of
3:20
unique challenges in that situation that
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if you're not a caregiver
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maybe you wouldn't realize
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caregivers are going through these things
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so with caregiving
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um it it
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it can become a full time job
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and I don't think that people who are needing care
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understand the complexities
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and how much um
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it takes from a caregiver
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to be able to fulfill that role
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and that's the the hardest part
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is that we really want to make sure
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that our loved ones are cared for
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but it can be so consuming
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that we lose our own selves in the midst of that
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I don't think that the person who needs care
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actually understands that's what's happening
4:15
it just seems to kind of morph that way
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and
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other people that I've talked to that are caregivers
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they they just seem to take on that role
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and the person who needs the care
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tends to lean so much on the caregiver
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that it it
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the caregiver almost takes on the
4:35
the illness I guess
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is a good way to say it you know
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it becomes instead of your Om
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it becomes our Om
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if instead of your dementia becomes our dementia if
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you know whatever it is
4:47
it becomes consuming to both people
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because
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the person probably
4:54
isn't able to handle the majority of their care
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yeah and
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I mean that's the situation you found yourself in where
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you know
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she couldn't do simple things like make herself a snack
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bathe herself you know
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eventually use the bathroom by herself
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those are you know
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that's why I said it's kind of like a toddler
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like you had to be there every second
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to make sure she wasn't hurting herself
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so you definitely would be on the back burner if
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if on a burner at all
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yeah I
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from my situation
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I kind of tended to get off the burner
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yeah I became
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I became so far removed from my
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from myself because
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I was giving her so much of my time and attention
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that I didn't have time
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I was trying to run a care in site
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I was taking care of her you know I
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I had all these things I had to juggle and
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and so the easiest thing for me to let go of
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was my doctor's appointments
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my follow up care my well being basically
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both physically and mentally
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yeah absolutely
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I mean that's a lot
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when you have no one else to worry about but yourself
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those are also things that we put off
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cause they're hard or we don't want to
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so especially
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when you have something that's really an obstacle
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it's very easy to put those things off and say
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I'll deal with that later
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right and
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you know at the
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the point where I was at was
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you know I was approaching
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I was approaching
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um five years
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when she got to
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where she really couldn't care for herself
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there was a time that she did go back to Arizona
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and I was able to kind of take care more of me
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but for that was only that was
6:45
that was fairly short lived
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and then she ended up getting sick in Arizona
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and we had to bring her back to North Carolina
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and then she was so far progressed at that point
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that it was she needed 24 hour care
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and you don't think about the little things about
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you've got to go get a scan
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oh dear
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I have to have somebody take care of this person
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I have to go get a scan
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but now I have to go to the get a scan all by myself
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and I didn't have anybody to lean on for
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for my support
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and
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I remember the first time I went for a scan by myself
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I was kind of like
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hit upside the head with this reality
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I don't have anybody here to help me
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in the difficult times and I just kept thinking god
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I hope none of my scans come out bad
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or what are we gonna do what's gonna happen to my mom
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um and luckily that didn't happen
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but those things all start playing in your head
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because you um
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you kind of need your help um
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on your own with your own disease
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your own ailments I don't even mean it om
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it could be anything
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a lot of caregivers have other illnesses themselves
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um you
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you tend to um
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just kind of push it aside because it's hard
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and you then
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you get all consumed in the caregiving of the person
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definitely and
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you know it's probably like
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you know when they say like the
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the days drag on and the years fly by
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like that's kind of a cliche thing to say
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but I think it kind of fits this
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like your
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your days are long your
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they're hard and you put things off
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and then all of a sudden six months went by
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and you're like oops
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I didn't do that scan or I didn't get to the eye doctor
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I didn't you know
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whatever whatever
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you know it's
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it's hard when you're so busy
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it it is hard
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but it's also oh shoot
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I need a colonoscopy
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I need a ride to go to the colonoscopy
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I need somebody to sit there and pick me up
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I don't have anybody
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there was nobody there that could take me
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so my colonoscopy didn't get scheduled on time
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um
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I couldn't take her to a mammogram or uh
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anything
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because I couldn't leave her alone in the waiting room
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I tried one time and it did not work
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she was she didn't understand that
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she had to stay in the waiting room
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and it was you know
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cat scans are fairly quick
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MRIs take a long time
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but I thought she could sit out there
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and behave but she wandered and she got in trouble
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and it didn't work so um
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I didn't take her with me anymore
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but it that
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then what happened was that my scans
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instead of getting every six months
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they went to once a year and then they um
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they kind of lingered sometimes
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they were a little over a year cause there's a
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you know even though I had
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um
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people that could watch her
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it was difficult
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because everybody works during scan times
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you know so if you need to go to the doctor appointment
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you have a set period of time that you can go
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which is when everybody else is working
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so you try to get a neighbor while they're working
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you try to get a a child or another sibling
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which I did not have but they're working
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and so it's just like you know
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it just kind of all falls on you
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and you have to be the one to
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you know suck it up and deal with it
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and it's not always it it's not always easy
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you get a lot of I know with me
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I can't speak for everybody
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but I have heard from other caregivers
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that they do develop a lot of resentment because
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you're trying to do so much with
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I'm not this is gonna sound terrible
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but no appreciation cause there isn't any appreciation
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you just do it because you have to do it
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because it was handed to you
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and you didn't ask for it
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you didn't want it but there's nobody else to do it
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so now here it is and you have to do it and
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and so you do get a little resentful of it
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because you lose yourself
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you lose your time you can't go to a movie
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you can't go out to dinner with somebody
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you you lose your friendships
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because you become so removed from everybody
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cause this one person
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becomes so much of your primary responsibility
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yeah so for someone who's going into a caretaker role
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whether they've been in it a while
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or maybe they're brand new to it
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what are some tips that you could give
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or some important takeaways
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that could help them navigate this
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um number one
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bring a social worker in
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you got it
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because they have tools that you don't even know about
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you don't think about or they can help you get tools
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I wish I would have brought home health
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into my mom's care earlier
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um
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I think people wait too long to get on palliative care
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or hospice
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hospice doesn't mean you have a terminal illness
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you're gonna die tomorrow
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my mother actually would have qualified for hospice
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much earlier than we actually got her on
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because with dementia and alzheimer's
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it does they
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there is a point where it does qualify
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when you can get home health
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you can at least get an aid to come in
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and sit for three hours
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maybe help you with some laundry
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there's things that they can do that are helpful
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that you can maybe just go outside and take a walk um
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but try to line up those things
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because
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it's very important that you don't let it consume you
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thinking that you are the only one
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cause you really are not
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you just don't have the tools yet
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and you can find tools talk to your doctors
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talk to social workers talk to your insurance company
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there are things out there that can help
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yeah that's great
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what about like are there any kind of like
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co op kind of things where
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where people trade like almost
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I'm thinking like babysitting where like
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you kind of trade like with
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do they have any kind of networks like that
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there are some communities that have that um
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there's also some like um
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teenagers that look for volunteer hours
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that will come and sit and there are also um
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retirees that will come and sit
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you know they're not gonna do any big chores for you
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but it's that
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I just need somebody to sit here for two hours
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while I go to the grocery store
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or I just need I got a doctor's appointment
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I just need somebody to come sit with them
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to make sure that they're safe
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um
13:24
that there are there are networks like that
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there's I think
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American Cancer Society is a good one to reach out to
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but the the issue is that they tend to be in larger
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metropolitan areas
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where we lived was more of a rural area
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and we did not have any of those
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plan you know
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um
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groups or plans that could help us with that
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yeah it was easier
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once I got around hospice
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it was easier
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I had a dedicated nurse that came once a week
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I had um
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I had um
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aides that came in three times a week
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you know cause you
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did you you even if they just take over the
14:06
the bathing I mean
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that's huge right there it was just
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cause those that was always a big chore for me was to
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cause
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it's not like you can just put them in the bathtub
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and be done in five minutes
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it was this prep for the bath
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during the bath getting out of the bath
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you know and it
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and so it was turned out to be hours
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so having an aid come by that could do that was
14:29
was very helpful
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I can imagine yeah
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that that's a big lift for sure um
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what about some ideas for caregivers
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not to lose themselves like how to
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can they focus on themselves
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and maybe not build up some resentment
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I think you have to
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I think the best way to not have resentment
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is to establish boundaries
14:54
early on you
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you need to to talk to you
14:58
the person that you're caring for
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and you need to also talk to their medical team
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because especially for women
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we tend to think
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we have to be the caretaker of the world
15:11
and we do not and it's okay to say no um
15:15
because most people don't ask you hey
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will you be my caretaker you just are
15:19
it's assumed you're the oh well
15:21
you're the the
15:22
you're the spouse you're the child
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you're the next of kin you
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you have to have this responsibility
15:30
and you really don't um
15:34
the the
15:36
I know
15:37
when you're looking at your loved one who needs help
15:39
it's really hard to say no
15:40
I'm not gonna help you but you can say
15:43
I can do this this and this for you
15:47
what I have seen in my years in this community
15:52
is that the caretakers take on too much responsibility
15:55
they try and tend to I don't want to well control
15:59
they tend to control the situation
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and then they get mad when the
16:05
their person relies on them too much
16:08
I think it's important to put it back on the person
16:12
if they're able in my case
16:14
my mom couldn't but
16:16
there were some things I could have done differently
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and I wish I would have had more boundaries
16:22
in the beginning and said
16:24
you know these are the things I can do
16:25
and this is the things I can't do
16:28
and at you know
16:29
I need this much time to myself
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I think it's very important
16:33
that you schedule time to yourself
16:34
to get out of the situation
16:36
I think it's very important that
16:39
that cancer ocular melanoma doesn't become the
16:45
main focus of the your lives
16:49
I think that that's really a dangerous slippery slope
16:53
because that's where I see the um
16:58
I see the most resentment on both sides
17:02
um sometimes
17:02
the patient doesn't want to be told what to do
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they don't want the caregiver taking over
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and then the caregiver feels
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well I have to do all this stuff
17:10
and you're doing nothing
17:12
and so the conversations that I've heard is like
17:14
well you won't let me
17:16
you know if you would just let me
17:17
I would do it myself but then you
17:19
on the other person comes in and says
17:21
well you don't do it right
17:23
so I have to do it and
17:25
and it gets into this kind of
17:29
I it's almost like a power struggle maybe
17:32
and so somebody's going to retreat back
17:36
and somebody's gonna go in control
17:38
so I think it's a lot of converse
17:40
excuse me I think it's a lot of conversation
17:42
so that there's equal parts there
17:45
that the person is supported the best that they can be
17:48
supported without you losing you
17:52
and without the patient losing them
17:55
because that also is a problem
17:57
when you have a caregiver who's overly exuberant
18:00
and wants to control things
18:02
then the patient feels like well
18:04
I don't have a say in my own care
18:06
my own life anymore you're handling everything
18:09
so it it
18:10
I think boundaries are really a good place to start
18:15
yeah and I would probably add
18:17
don't be afraid to re evaluate the boundaries
18:19
if they're not going well
18:20
because I can imagine myself
18:23
as if I was in a caretaker role
18:25
I could imagine that I would over commit
18:26
and take on too much
18:28
because I wanted to be there for my person
18:30
show support I wanna help
18:32
and then a few months in I would go oh
18:34
this isn't sustainable like
18:35
I need I need to change the game
18:37
and so I think making it okay to sit down and say
18:41
let's re evaluate
18:42
do you really need as much as I'm giving
18:44
is it okay if I back off a little bit
18:46
I'm burning out and be honest I'm
18:48
I'm burning out I need
18:49
I need a different direction
18:51
I think that's important too
18:53
and I think that um
18:57
there's different
18:57
different levels as we move through our our
19:01
our illnesses
19:04
some days we need more help
19:05
and some days we need less help
19:06
and I think that as a caregiver
19:11
we have to take those cues from our person
19:14
cause sometimes
19:14
our person doesn't want to hurt our feelings
19:16
you know they might
19:17
you know I know in the early days
19:19
I wanted to cook I really did
19:22
but I wasn't allowed to cook because
19:24
oh well
19:24
you can't see let me do it
19:26
and I I know it was out of care
19:29
but there were a lot of things that were done for me
19:32
that I could have done myself
19:34
um
19:35
but
19:39
I didn't want to hurt anybody's feelings
19:41
I didn't want to you know
19:42
I don't want to upset anybody so I didn't say anything
19:46
then
19:48
you know then when I
19:49
when our
19:50
my separation happened and I did not have a caregiver
19:52
and I had to do all these things myself
19:54
I managed fine um
19:56
but it it's just kind of this really catch 22 situation
20:03
you can get yourself in if you're not careful
20:05
and it can be bad
20:07
and resentments build and then trouble starts
20:11
and then divorces happen or splits happen
20:14
or something happens that
20:17
because people weren't felt
20:19
didn't feel understood or appreciated or taken care of
20:22
you mentioned earlier palliative care
20:24
let's talk about that for a minute
20:26
cause I know there's a lot of questions about what
20:28
exactly palliative care is
20:30
when do you know it's time to bring them in
20:33
it you know
20:34
a lot of people wait too long
20:35
what would be a good time to bring them in
20:38
as soon as you feel like you have care
20:41
that really needs to be managed
20:44
if you are having multiple doctors appointments um
20:48
if you are having
20:50
multiple treatments or a a very difficult treatment
20:55
that would be the time to bring them in
20:58
because your medical situation has changed
21:00
and you're gonna need medical support
21:02
I don't mean hospital or doctor support
21:06
but you're going to need some medical support
21:08
you're gonna need somebody there to help you
21:10
just to manage things so if you're metastatic
21:14
I would look into getting palliative care
21:16
pretty soon after I started treatment
21:19
because some of these treatments are tough and
21:22
and having a
21:22
a palliative care to help you get through it
21:25
is a good thing
21:26
but I think you should ask that question
21:30
as you know you might have to ask it many times
21:33
but ask that question early on in your journey
21:36
that you would need palliative care for metastatic
21:40
for those of us that aren't metastatic
21:42
we probably wouldn't qualify for palliative care uh
21:45
because once we have our radiation
21:48
yes we have issues
21:49
and we have a hard time doing things
21:52
but at the same time
21:55
we're not um
21:57
medically needy so
21:58
I think you have to have a medical need
22:01
to start palliative care but if it
22:03
for me if I was metastatic
22:05
as soon as I started taking treatments
22:07
for metastatic disease
22:09
I would get palliative care right away
22:12
and can you give
22:13
kind of a nutshell version of what palliative care is
22:16
if someone's like oh
22:17
that sounds scary sounds like hospice
22:20
palliative care is not hospice
22:22
hospice is something totally different
22:25
you don't have to be in a
22:27
in a you know
22:29
life ending situation you just need support
22:32
they can help you with managing your pain
22:34
they can help manage your med
22:36
they're a good bridge
22:37
between you and your physician team
22:40
they they're
22:41
they offer support
22:42
they can help you kind of coordinate some in home care
22:46
if it's necessary or if you think it would be helpful
22:49
so they they can help coordinate the caregiving part
22:52
that might be too much for your person
22:55
uh I know there are some diseases that you're sent home
22:59
and you have to give the infusions yourself
23:01
and it's like well
23:03
I'm not a nurse how can I give my loved one an infusion
23:05
I don't know the first thing about this
23:08
having palliative care come in would be helpful
23:11
because they can kind of lean on you or
23:14
I'm sorry you can lean on them and
23:15
and they can help support you that way
23:18
so
23:18
always ask if you think that it is of a benefit to you
23:22
ask as soon as you can if you don't qualify
23:25
they'll let you know when you do qualify
23:27
and you just keep asking for it
23:29
until you get to a point where they say yes
23:31
we can come in now
23:33
and they help with other things with the family
23:36
not just the patient as well right
23:38
yeah
23:40
they're um
23:41
this is not a good
23:43
it's not a good explanation of them
23:45
but they're almost like the coordinator
23:48
if you look like the center of the wheel
23:51
they're they're in the middle
23:52
and they kind of
23:53
can have all these little fingers that can reach out
23:55
to help kind of coordinate
23:56
so that the wheel moves more smoothly
24:00
yeah so even if you
24:01
as the patient are thinking I
24:03
I can do this I've got my caregiver
24:04
I'm okay but maybe you have kids in the picture
24:07
palliative care can come in and help with
24:09
you know making sure the kids have things
24:13
yeah pal
24:13
I mean they can do so much
24:16
and if they don't know what to do
24:18
they can find out how to help you
24:20
or they can bring in a social worker to help you
24:22
but
24:23
I think I just spoke to a lady that's a social worker
24:26
about um
24:28
doing a podcast she was a volunteer for us at the
24:30
one of the 5 KS and so
24:32
we got started talking about social workers
24:34
and what they do
24:35
and people have this odd idea what a social worker is
24:39
you don't need to be in foster care or CPS
24:42
or in danger to get a social worker
24:45
a social worker has this
24:46
vast knowledge of the community around you
24:50
and they can help guide you
24:52
to services that are out there
24:54
that you don't even know are there
24:56
um I just talked to one patient
24:59
who found that their hospital offers rides
25:02
to and from treatment they didn't know that
25:05
until they contacted the social worker
25:07
the social worker set it all up
25:08
now they don't have to worry about
25:09
how am I gonna get back and forth
25:11
to my doctor's appointments
25:12
to my treatments to my radiation
25:14
my infusions they
25:15
they had a a
25:16
a shuttle van that just picks him up
25:18
takes him to their treatment
25:20
picks him up after the treatment
25:22
takes him back home
25:23
now he doesn't have to worry about driving
25:25
he doesn't have to worry about
25:26
getting somebody to drive him
25:28
you know everything is now taken care of and
25:31
and that is the beauty of working with a social worker
25:34
and a palliative care team
25:36
they they kind of
25:37
take a lot of the pressure off of the caregiver
25:39
and of the patient
25:42
yeah and
25:43
we just did a episode with a social worker
25:45
not too long ago Molly Vocino
25:47
I believe was her name so check out that
25:49
um I can link it in the show notes as well
25:52
but yeah
25:52
I mean I think that was my situation too
25:55
like when I heard social worker
25:57
I think children in foster care that are being abused
26:00
and um
26:01
you know you don't want a social worker in your house
26:02
because it means you have problems going on
26:05
but this is a completely different situation
26:07
they're different kinds of social workers
26:08
they don't work with abused children
26:10
they work with cancer patients
26:11
and they know exactly what resources are
26:13
available to you and how to get them
26:15
and they have networks with other social workers
26:18
so even if you are asking for something
26:20
that maybe they don't know
26:21
they can reach out to their network and find it for you
26:24
so yeah definitely
26:26
yeah this person I was talking to
26:28
she's a social worker in transplant
26:30
which is completely different than cancer
26:32
but she says well
26:32
if I don't know the answer
26:34
I could I know who to call to get the answer
26:37
because you know they
26:38
they they have this vast network
26:39
and it kind of goes that old saying
26:42
you don't know till you know you know
26:45
you don't know till you know you
26:47
and if you don't ask you're never gonna know
26:49
so ask that that's probably my biggest takeaway
26:53
ask everybody and anybody for anything
26:56
don't be afraid to say I need help
26:58
how can I get this help you know
27:00
is there a social worker
27:01
is there a palliative care team
27:03
who can I talk to to get help
27:05
because the last person to offer help
27:07
is usually your physician
27:09
cause they're not thinking about that
27:11
they're very narrow minded about your own health
27:14
they don't ask hey caregiver
27:16
how you doing you handling
27:18
it's okay no
27:20
they just assume that you are
27:22
and if you're not then
27:23
oh well
27:24
they can't help you with that
27:25
because that's not their wheelhouse
27:29
absolutely so to wrap up this episode
27:33
what's like a final takeaway
27:35
that you wanna leave the caregivers with
27:39
for the for the caregivers
27:42
don't lose yourself
27:44
don't take on more than you can handle
27:46
don't be afraid to say no
27:48
that's probably the biggest thing
27:49
don't be afraid to say no or not
27:51
at this time I can't help you at this time
27:54
I can help you at this time
27:56
I'm available Wednesday at 4
27:58
if I can help you then it's okay to schedule um
28:03
because you can get in real deep real fast
28:07
and then nobody asks you to be the caregiver
28:11
you just get that handed to you
28:13
for those people that don't have a caretaker
28:15
and are a caregiver to somebody else
28:18
whether it's a a parent
28:19
a child a spouse
28:21
when you need care for yourself
28:24
that's a real important thing is don't
28:27
don't forget to take care of your own self
28:30
you know make sure that you are
28:31
keeping up with your medical appointments
28:32
make sure that you you ask for help yourself
28:35
and it's okay for you to get somebody to kind of
28:38
be your caregiver because you can't do everything
28:42
it's just impossible
28:43
absolutely and take advantage of those resources
28:47
the social workers and the palliative care and um
28:49
any resources in your in your community
28:53
um you know
28:54
like we were talking about
28:54
if you can find a maybe a Facebook group or something
28:56
where people are connecting
28:58
even if it's just for support
28:59
so look for those resources
29:01
check out our website ACureInSight.org
29:03
we have a lot of resources on our website as well
29:06
including our Tuesday night zoom group
29:08
um if you just need a little more support
29:10
that's for patients
29:12
and um there is a Facebook group for the families
29:15
correct
29:17
yeah there's um
29:18
ocular melanoma community is probably the better one
29:22
that is monitored and safe
29:24
and they don't have bots and yeah
29:26
they don't yeah
29:27
allow spam and that sort of stuff
29:29
but ocular melanoma community is for um
29:31
family and friends and community members
29:34
that are not necessarily patients
29:35
well there are patients in there
29:37
but it wasn't designed for
29:38
to be the patient advisory group
29:41
right so find resources
29:45
reach out if you need help
29:46
you can reach out to us as well
29:48
any of our email addresses are just our first names
29:51
at ACureInSight.org
29:53
I hope everyone has a wonderful
29:55
safe week we'll see you guys next time