Spotlight on Frontotemporal Dementia: Wake Up Maggie!

1
00:00:00,000 --> 00:00:04,240
is it if you're not being born then you're busy aging is that right?

2
00:00:04,240 --> 00:00:08,240
That's right. That's right. Yeah. If you're not too busy being born you're too busy aging.

3
00:00:08,240 --> 00:00:15,120
I love that so much and connect with that so much in my story with her because I mean I feel like

4
00:00:15,120 --> 00:00:21,680
that was kind of the pivot I took of okay I want to live I always say I want to live and love

5
00:00:21,680 --> 00:00:23,680
as big as I can.

6
00:00:23,760 --> 00:00:30,160
Will you still be me? Will you still be me? When I'm 64.

7
00:00:30,160 --> 00:00:37,680
And now the podcast we're together we discuss proactive aging on your terms connecting to the

8
00:00:37,680 --> 00:00:44,080
professional advice of our special guests while creating better days throughout the aging process.

9
00:00:44,080 --> 00:00:46,720
Now here's your host Mark Turnbull.

10
00:00:49,360 --> 00:00:54,480
Hello everyone and welcome back to another lively discussion on aging today we are the podcast

11
00:00:54,480 --> 00:01:01,040
where together we're exploring the many options to aging on your terms you can find aging today

12
00:01:01,040 --> 00:01:09,600
and our past eight years of programming yes we've been on the air for eight years over 500 episodes

13
00:01:09,600 --> 00:01:16,880
about aging and aging on your terms you can follow us all you got to do is go to aging today.us

14
00:01:16,880 --> 00:01:24,000
that's my website and then for those of you that would rather follow on podcast we're on many of

15
00:01:24,000 --> 00:01:30,720
them Spotify Pandora Apple I heart and now YouTube so you can follow us wherever you'd like.

16
00:01:30,720 --> 00:01:37,200
And then also as we always want to know I just want to say thank you all of the followers out there

17
00:01:37,200 --> 00:01:43,920
there's been over 200,000 of you over the eight years that have followed us and I want to say thank

18
00:01:43,920 --> 00:01:49,920
you and if you have any other questions on the aging process reach out to me your host Mark Turnbull

19
00:01:49,920 --> 00:02:00,960
and my email is mark@agingtoday.us it's mark with a K at agingtoday.us and as you know this is a

20
00:02:00,960 --> 00:02:06,960
podcast about aging and we always say if you're not too busy being born you're too busy aging and it

21
00:02:06,960 --> 00:02:14,080
doesn't matter what age you are we are all aging and there yes there are those villains that come

22
00:02:14,080 --> 00:02:22,800
into our lives and disrupt our aging process they disrupt our lives and we're just trying to figure

23
00:02:22,800 --> 00:02:30,000
out how to live successfully how to live our best lives possible as we're on this earth and as we

24
00:02:30,000 --> 00:02:40,880
traverse it together so we have been blessed to have an incredible personality on the show today and

25
00:02:40,880 --> 00:02:46,080
I'm so looking forward to because we're going to talk about one of those villains it's called frontal

26
00:02:46,080 --> 00:02:57,280
temporal dementia or frontal temporal what's the the other word the D word it's degenerate yeah and

27
00:02:57,280 --> 00:03:04,160
so we're going to be talking about that in here to guide us along the way and tell her story about

28
00:03:04,160 --> 00:03:11,280
how this particular villain interrupted and came into her life it is Katie Prentice she is an actress

29
00:03:11,280 --> 00:03:19,920
a filmmaker and also a caregiver a full-time caregiver not only got caregiver to four of her own children

30
00:03:19,920 --> 00:03:26,080
but later she became a caregiver to her mom so we're going to be talking to her Katie welcome

31
00:03:26,080 --> 00:03:33,360
to aging today thank you so much mark it's really nice to be here yeah very excited to have you on

32
00:03:33,360 --> 00:03:42,240
aging today and we share a fellow we're fellow neighbors in in a city here in Portland so

33
00:03:42,240 --> 00:03:49,840
it's nice to have somebody close by so absolutely we love the Pacific Northwest for sure yeah yeah

34
00:03:49,840 --> 00:03:54,800
you look familiar and maybe I don't know if it was on the screen or if I've seen you walking the streets

35
00:03:54,800 --> 00:04:02,320
of you know some place but you do look familiar and so I'm excited to hear your story we always start

36
00:04:02,320 --> 00:04:08,000
out aging today with you know not so much what's in your wallet although if you want to share that

37
00:04:08,000 --> 00:04:15,760
we're totally okay with that but what's in your story and so tell us a little bit about Katie Prentice

38
00:04:15,760 --> 00:04:23,360
and how you got to this place yeah that's a great question because I would say my life took a

39
00:04:24,560 --> 00:04:33,200
sharp turn when I discovered my mom's diagnosis of front of temporal dementia or we call it FTD

40
00:04:33,200 --> 00:04:44,000
for short as well I have four kids I was a been a portrait photographer for 17 years now and I was

41
00:04:44,000 --> 00:04:52,240
barely content managing those two things in my life my own business and my large family and

42
00:04:53,360 --> 00:05:00,880
wasn't too far and I was like upper 30s so were 40s when my mom's behavior started to change

43
00:05:00,880 --> 00:05:08,240
and we started to be really curious about what was going on with her fast forward through multiple

44
00:05:08,240 --> 00:05:14,000
doctors appointments and lots of questions we discovered that she had front of temporal dementia

45
00:05:14,000 --> 00:05:21,760
I had never heard of that I heard the word dementia I was confused by it because my mother at that

46
00:05:21,760 --> 00:05:29,600
point was only 62 and so it felt really confusing I was oh I don't even remember how old I mean maybe

47
00:05:29,600 --> 00:05:37,440
around 40 at that point and my sister and brother and I were just scrambling with what to do and how

48
00:05:37,440 --> 00:05:46,080
to help her but things progressed fairly quickly and we found ourselves volunteering to move mom to

49
00:05:46,080 --> 00:05:52,320
Oregon she was in Georgia with my other siblings at that point so we moved mom into our home and

50
00:05:52,320 --> 00:05:59,360
was able to be her caregiver for about six months in our home and then her remaining year and a half

51
00:05:59,360 --> 00:06:08,800
here in Oregon we lost mom when she was 68 I had never acted or made a film at that point but as you

52
00:06:08,800 --> 00:06:15,440
know as most of us have if if you have experienced any type of grief in your life you know how quickly

53
00:06:15,440 --> 00:06:27,040
it can change your life and I feel like one of my moms gifts to me was to in losing her was to think

54
00:06:27,040 --> 00:06:33,280
about how I want to deliver my life as big as I can and love your statement about if you're not

55
00:06:33,280 --> 00:06:39,920
is it if you're not being born then you're busy aging is that right that's right yeah if you're not

56
00:06:39,920 --> 00:06:47,680
too busy being born you're too busy aging I love that so much and connect with that so much in my

57
00:06:47,680 --> 00:06:54,560
story with her because I mean I feel like that was kind of the pivot I took of okay I want to live

58
00:06:54,560 --> 00:07:01,760
I always say I want to live and love as big as I can and I definitely look back to that loss with

59
00:07:01,760 --> 00:07:10,080
mom in that crisis and journey with her to how that came to be in my life now so and six and 68 is

60
00:07:10,080 --> 00:07:20,960
young I'm 67 so I can relate to that that number yeah and that'd be way way way too young exactly exactly

61
00:07:20,960 --> 00:07:27,440
in my children were young and it was very confusing because most people when you say dementia they say

62
00:07:27,440 --> 00:07:34,720
oh my grandmother had dementia were my parents and you asked how old and it's often EDIs and so

63
00:07:34,720 --> 00:07:40,960
it's like still very very sad I don't mean to diminish anyone's pain in that but it's like when

64
00:07:40,960 --> 00:07:45,680
you're in your like you're dealing with your parent who's in their prime style you're like wait

65
00:07:45,680 --> 00:07:54,320
but this isn't that you know super confusing it it certainly is so let's start out with a good

66
00:07:54,320 --> 00:08:04,560
definition of dementia so is that something that you can address or you know I probably so dementia I

67
00:08:04,560 --> 00:08:12,880
can I can tell you this I'm not an expert in dementia whatsoever um again my own process with my mom

68
00:08:12,880 --> 00:08:19,840
when they said front or temple dementia I was so overwhelmed by everything that I didn't even

69
00:08:19,840 --> 00:08:25,840
do a lot of research and that phase of my life it wasn't until I lost her and I started making films

70
00:08:25,840 --> 00:08:32,240
that I started learning more and connecting more with the FDD community specifically but I can share

71
00:08:32,240 --> 00:08:40,480
this dementia is the umbrella it's not an official diagnosis under that umbrella it's all types of

72
00:08:40,480 --> 00:08:48,720
dementia all simers is included front or temporal dementia is included and even within front or temporal

73
00:08:48,720 --> 00:08:55,840
dementia there's different strains and types there's primary progressive aphasia which is what my

74
00:08:55,840 --> 00:09:02,400
mom had where she lost her ability to speak and then there's Lewy body dementia which is under the FDD

75
00:09:02,400 --> 00:09:09,600
umbrella I believe and then there's behavioral variant under FDD which really affects someone's

76
00:09:09,600 --> 00:09:18,000
personality and like you know they might be someone who is the kindest soul ever and then they

77
00:09:18,000 --> 00:09:24,800
become like angry or aggressive and so people are very confused by those behavioral changes

78
00:09:26,160 --> 00:09:34,240
so that's a little snippet of yeah yeah and you're absolutely correct dementia is an umbrella term

79
00:09:34,240 --> 00:09:40,880
and a lot of people get confused with that word yes it sounds like a disease it's not really a disease

80
00:09:40,880 --> 00:09:47,600
what it is it's a description of what's happening to your brain the brain is dying how what's

81
00:09:47,600 --> 00:09:55,040
causing it and there are many types of diseases that affect our brains all simers being probably the

82
00:09:55,040 --> 00:10:05,040
most prevalent but your mom was diagnosed with frontal temporal you know degenerative dementia and

83
00:10:05,040 --> 00:10:11,520
that is there's not that many in comparison to all simers there's not that many people that are

84
00:10:11,520 --> 00:10:20,400
living with that one yeah that one is I will say the hardest part about FDD is that it often gets

85
00:10:20,400 --> 00:10:25,920
misdiagnosed and it can take an average of three and a half years to get an accurate diagnosis

86
00:10:25,920 --> 00:10:30,640
so I believe that there's probably a lot of people that have frontal temporal

87
00:10:30,640 --> 00:10:38,240
degeneration or dementia that don't even know and you're right I mean I think all simers we all

88
00:10:38,240 --> 00:10:42,880
are more familiar with where you know you see the memory change and the memory being affected

89
00:10:43,520 --> 00:10:51,760
whereas FDD is the most common type of dementia under the age of 65 which is I think really helpful

90
00:10:51,760 --> 00:10:58,800
to know for people who are seeing their loved ones exhibiting signs or different behavioral changes

91
00:10:58,800 --> 00:11:06,720
they can maybe look into FDD as an option yeah yeah it's you know it's interesting how many

92
00:11:06,720 --> 00:11:13,440
variants or types of dementia there are and they all have their their downsides you know there's

93
00:11:13,440 --> 00:11:20,400
nothing exciting about you know acquiring any of those diseases but you know what what were some

94
00:11:20,400 --> 00:11:28,240
of the things that you saw changes in your mom that you go mom there's something going on or did

95
00:11:28,240 --> 00:11:33,840
your mom come to you and say you know Katie I there's something going on here and I can't put my finger

96
00:11:33,840 --> 00:11:41,120
on it um my mom didn't really ask that question herself I think she had to have been confused but

97
00:11:41,120 --> 00:11:49,200
my mom um was such a little happy go lucky person and so sweet there was so much about her personality

98
00:11:49,200 --> 00:11:55,680
that was just so sweet and lovable but she also was kind of quirky like even growing up um I remember

99
00:11:55,680 --> 00:12:02,160
in high school feeling like she didn't always catch social cues or anything so there's so there

100
00:12:02,160 --> 00:12:09,360
were already certain things about her that I felt like I had to explain or or would confuse me

101
00:12:09,360 --> 00:12:18,400
growing up as her child yeah so that I say that because as I think her FDD was progressing we didn't

102
00:12:18,400 --> 00:12:26,000
we weren't quick to notice some of the changes with her but she started becoming um almost like

103
00:12:26,000 --> 00:12:31,920
more obsessive about certain behaviors and habits that she had so she was always good with

104
00:12:31,920 --> 00:12:37,440
recycling but then I got to where she had like a closet full of recycling and we're like why is all

105
00:12:37,440 --> 00:12:42,800
of this in here so we even noticed little things and we kind of say I wrote it off as oh well she

106
00:12:42,800 --> 00:12:49,120
lifts the loan so no one's there to like tell her to not do that she's not bothering anyone else with

107
00:12:49,120 --> 00:13:00,800
some of these behaviors but then she started sharing um things that I later found that were delusions

108
00:13:00,800 --> 00:13:08,240
and I say later because at first she would share things that sounded pretty normal like she would say

109
00:13:08,240 --> 00:13:18,240
oh there was a man in my backyard and I was like who what and she would say oh is a man in his son

110
00:13:18,240 --> 00:13:23,280
and I was like well who were they and she'd say I don't know and I'm like well what did you hear

111
00:13:23,280 --> 00:13:28,080
them say and she was like they were just talking I couldn't hear them and I would ask questions and

112
00:13:28,080 --> 00:13:34,320
it sounded all like reasonable but of course like I'm living far from her and I'd get worried I'm like

113
00:13:34,320 --> 00:13:43,200
well what what's going on like who's in her backyard so then as time moved on her stories became more

114
00:13:43,200 --> 00:13:49,760
extreme like she would share about a school bus of children being let out into her yard or

115
00:13:51,200 --> 00:13:59,440
to as she told me about a couple who were digging a hole through her roof um so once I started hearing

116
00:13:59,440 --> 00:14:04,720
some of those stories I was I called my sister and I was like we have to get her into a doctor I don't

117
00:14:04,720 --> 00:14:11,120
know what's going on like she doesn't really drink like maybe some meds are off and the first doctor

118
00:14:11,120 --> 00:14:17,440
we took her to was a psychiatrist and they said she has a delusional disorder she can't drive or live

119
00:14:17,440 --> 00:14:27,440
alone and this was like before 62 like she was like you know 6061 did you see any of those um

120
00:14:27,440 --> 00:14:36,400
behavioral patterns starting to develop in her 30s and 40s in 50s or did it all of a sudden just

121
00:14:36,400 --> 00:14:44,400
come on the scene that's a part I don't know it's it's tricky because my mom also had

122
00:14:45,200 --> 00:14:50,640
the neurologist says this isn't related to FDD and I don't think scientifically it is but my mom did

123
00:14:50,640 --> 00:14:58,000
have a major car accident when I was in college so she was oh I can't I can't do math really fast but

124
00:14:58,000 --> 00:15:06,720
she was younger she's probably 50 early 50s I guess at that point and um she um or maybe mid 50s but

125
00:15:06,720 --> 00:15:15,040
she had a car accident and I remember thinking like her emotional response to life shifted after that

126
00:15:15,040 --> 00:15:23,760
mm-hmm but here's the confusing part um the neurologist said that they didn't see any damage from like

127
00:15:23,760 --> 00:15:30,400
an accident in her brain to signify the diagnosis of FDD like they didn't see any correlations sure

128
00:15:30,400 --> 00:15:37,200
unlike what's happening in in modern sports today with concussions and things like that that are

129
00:15:37,200 --> 00:15:43,440
fine they're finding that that's contributing to many dementia's yeah right and I and I kind of wonder

130
00:15:43,440 --> 00:15:49,040
well we know so little about the brain we're just like starting to learn more about the brain so

131
00:15:49,040 --> 00:15:56,080
part of me was like well I don't know if if I can even trust that because what do we what do we know um

132
00:15:56,080 --> 00:16:03,680
what's your magic brain injury especially but um the the the the information I have now is that her

133
00:16:03,680 --> 00:16:13,040
younger brothers also diagnosed with FDD in the last year or two he's in his 70s um so I do know

134
00:16:13,040 --> 00:16:20,800
now that as much as I would love for her diagnosis to be related to her accident because it means

135
00:16:20,800 --> 00:16:28,320
less genetic possibility for me and my family and um her brother being diagnosed kind of goes oh

136
00:16:28,320 --> 00:16:34,320
okay well that's probably then we have a genetics strain of so kind her we're likely going to have one

137
00:16:34,320 --> 00:16:41,920
I was that was one of the things I was gonna ask you is it familial it did did her mom and dad experience

138
00:16:41,920 --> 00:16:50,880
you know um no I mean we didn't see anything like this in her parents or nor her other siblings um

139
00:16:50,880 --> 00:16:58,640
oh it's so confusing and I and I don't know I think looking back for sure I didn't quite answer your

140
00:16:58,640 --> 00:17:04,160
question earlier about did we see signs in her 30s 40s 50s I did share about the accident but I think

141
00:17:04,160 --> 00:17:11,520
I think looking back now that I understand FDD more I think oh there's no telling like there's

142
00:17:11,520 --> 00:17:17,920
no telling like she could have been experiencing this like way earlier on but we just didn't have

143
00:17:17,920 --> 00:17:24,480
anywhere with all and I think a lot of people like a lot of us if we experience like any kind of

144
00:17:24,480 --> 00:17:32,640
decline we don't really want to talk about it because it doesn't feel good you know yeah so yeah so

145
00:17:32,640 --> 00:17:42,560
I'm gonna I'm gonna read some of the symptoms that I looked up and tell me which ones you know your mom

146
00:17:42,560 --> 00:17:53,920
was experiencing if any so just an ambition that's the you know the offensive comments and things

147
00:17:53,920 --> 00:18:02,240
like that it's ignoring other people's personal space shoplifting you know some of the the behaviors

148
00:18:02,240 --> 00:18:09,440
that come out of that reckless spending um touching strangers in inappropriate sexual behavior

149
00:18:09,440 --> 00:18:17,520
aggressive outbursts that's that's just one okay so was she experiencing any of those types of

150
00:18:17,520 --> 00:18:24,000
symptoms um my my mom didn't really have the behavioral variant so she she was giving like

151
00:18:24,000 --> 00:18:31,120
quieter and smaller I will say that she was very susceptible to scams and so she did like

152
00:18:31,120 --> 00:18:38,320
give money to someone who was calling her and saying that they wanted to marry her and she was like

153
00:18:38,320 --> 00:18:44,240
male ordering a lot so there was some like compulsion control issues with her it was more like

154
00:18:44,800 --> 00:18:52,720
spending and like ordering stuff online um yeah but it was less like a shift in her personality

155
00:18:52,720 --> 00:19:03,520
gotcha so so with temporal um there's there's a behavioral element and and what's the other elements

156
00:19:03,520 --> 00:19:07,840
that maybe your mom she didn't wasn't leaning towards the behavioral she was leaning more towards

157
00:19:07,840 --> 00:19:14,560
yeah she had she had a variant called primary progressive ephesia which is the loss

158
00:19:14,560 --> 00:19:22,560
of ability to speak also affects like your handwriting and all of your communication so I saw a with

159
00:19:22,560 --> 00:19:32,240
my mom we saw a shutting down of her personality a shutting down of her ability to speak um she definitely

160
00:19:32,240 --> 00:19:39,040
had compulsion control with like food and drink she was very like food fixated and beverage fixated

161
00:19:40,080 --> 00:19:49,360
um but really yeah I was just like the her when she did speak as she progressed it became a whisper

162
00:19:49,360 --> 00:19:56,080
she had a lot of repeating at the same phrases she would say okay okay okay and she would say

163
00:19:56,080 --> 00:20:02,240
let's go a lot um those were kind of her too but I know other people with primary progressive ephesia

164
00:20:02,240 --> 00:20:10,480
might might do a um you know like a catchphrase that we all use they might repeat that over and over

165
00:20:10,480 --> 00:20:19,120
again so it's kind of like what they can access verbally easily so um so that was my mom's is is more

166
00:20:19,120 --> 00:20:27,040
of it just becoming more quiet and and less less personality period like she didn't show expressions

167
00:20:27,040 --> 00:20:33,680
very much on her face it was so interesting mark could because anytime I took a photo of her she would

168
00:20:33,680 --> 00:20:39,760
smile like she was aware enough to know that there was a camera and she can make herself smile but in

169
00:20:39,760 --> 00:20:45,920
general she never expressed that way so it would almost frustrate me in this weird way because

170
00:20:45,920 --> 00:20:54,800
she looked as if she was aware and present when she really wasn't and like I I don't know I just

171
00:20:54,800 --> 00:21:01,680
I it's like you want people to know like what you're dealing with and like how hard it feels or how

172
00:21:01,680 --> 00:21:06,880
lonely it feels when you see your loved one disappearing in front of you and so when she would

173
00:21:06,880 --> 00:21:13,360
smile I'd be like that's not even real like that's so frustrating yeah I don't know um it's just one

174
00:21:13,360 --> 00:21:18,640
of those things I guess yeah so the first step that you took is you went to a psychologist

175
00:21:19,760 --> 00:21:26,800
and and and then where where did it your journey lead you next yeah to a neurologist or where

176
00:21:26,800 --> 00:21:34,640
where did they go so that was my sister so my sister took my mom in to because they were all

177
00:21:34,640 --> 00:21:42,160
both in Georgia my sister took her to psychiatrist we got the delusional die delusional disorder diagnosis

178
00:21:42,160 --> 00:21:48,080
or suggestion and said that mom shouldn't drive her live alone so my sister and I were scrambling

179
00:21:48,080 --> 00:21:54,560
what do we do it was a October and my sister was like she can come live with us and we'll just get

180
00:21:54,560 --> 00:21:58,640
we both said we'll get through the holidays and we'll figure out what to do next you know because

181
00:21:58,640 --> 00:22:06,160
it just felt so like such a big decision thrown on us so my mom came to live with my sister

182
00:22:06,160 --> 00:22:10,240
through the holidays we became more and more apparent that mom needed more help

183
00:22:10,240 --> 00:22:17,520
they put her on some medications at one point that were horrible like she turned into more of a zombie

184
00:22:17,520 --> 00:22:24,800
like she would just sit there like you know not able to like keep slaughter from coming out of her mouth

185
00:22:24,800 --> 00:22:32,480
stuff like that was like very sedating so then I'm trying to remember the order but I know that

186
00:22:32,480 --> 00:22:38,560
eventually my sister got her into a neurologist and was able to do a brain scan and that is when we got

187
00:22:38,560 --> 00:22:46,160
the diagnosis of frontotemporal dementia and that was probably I wish my sister would know but I

188
00:22:46,160 --> 00:22:52,240
can't remember the exact amount of time but it probably was at least a year in between that first

189
00:22:52,240 --> 00:22:58,560
visit and then the the official diagnosis and then you have all the like practical reality of like

190
00:22:58,560 --> 00:23:06,160
trying to get your parent into doctor's office when they have no means of income and like trying to

191
00:23:06,160 --> 00:23:11,920
figure out the housing situation my mom ended up living with my sister for two years

192
00:23:12,640 --> 00:23:19,840
and then we when they were kind about their end with caring for her I was like I can't have mom go

193
00:23:19,840 --> 00:23:25,760
to a nursing home at this point because it felt like I hadn't been able to engage in the way I wanted

194
00:23:25,760 --> 00:23:31,840
to engage and so my husband and I made the decision to have mom move out to work and I'm really

195
00:23:31,840 --> 00:23:39,040
glad even though those years were really brutal to witness I knew that I needed to be present with her

196
00:23:40,000 --> 00:23:47,760
at her end of life I needed to be able to touch her and be with her and I knew that's what I would want

197
00:23:47,760 --> 00:23:56,080
down the road when I looked back so and it's such a great gift to be able to give back to your mom who

198
00:23:56,080 --> 00:24:03,360
who gave that gift to you of life and she was your caregiver and I mean that's how I look at it

199
00:24:03,360 --> 00:24:08,560
because I'm in a similar situation you know mom and dad were at that place where they needed more

200
00:24:08,560 --> 00:24:15,280
assistance in their home so we decided you know I own an in-home care agency and a hospice agency so

201
00:24:15,280 --> 00:24:23,280
you know I'm skilled in and can handle that but that is a mean that everybody should

202
00:24:23,280 --> 00:24:32,880
and it's hard even for me and it's not an easy road to go down but I'm grateful that I'm here

203
00:24:32,880 --> 00:24:40,720
and giving her her best life just like you did yeah it's it is such a gift for everyone involved

204
00:24:40,720 --> 00:24:48,640
if you can do it I think that you think I remember thinking like oh this will be easy because the

205
00:24:48,640 --> 00:24:54,320
love's there but then I think because you're also experiencing so much layers of loss

206
00:24:54,640 --> 00:25:03,120
on such a deep personal level I realized that caregivers that that didn't have a relationship with mom

207
00:25:03,120 --> 00:25:11,200
had a sense of ease that I didn't have because they weren't losing anything of her that they knew

208
00:25:11,200 --> 00:25:16,960
they could just be with her in the moment and I do think that that's the thing with dementia or

209
00:25:16,960 --> 00:25:22,960
caregiving is like the more you can stay present like with exactly where you are the better

210
00:25:24,160 --> 00:25:31,360
but you're grieving the past and you're fearing the future and that's like such a hard sandwich to be

211
00:25:31,360 --> 00:25:38,480
in the middle of how it is it is and I love your word the presence being present and you know one of

212
00:25:38,480 --> 00:25:44,880
the things that I've always appreciated about our caregivers and we've had hundreds of them if not

213
00:25:44,880 --> 00:25:52,960
thousands of them over the years they're incredible people and the best ones they had that innate

214
00:25:52,960 --> 00:25:59,200
gift and ability to stay present and those were the people that are game changers that make a

215
00:25:59,200 --> 00:26:08,800
difference in somebody's life yeah caregivers are angels did you know that you're not too old or too

216
00:26:08,800 --> 00:26:16,720
late to pivot and try a new career I made my first film in 2020 and now I'm making my first full

217
00:26:16,720 --> 00:26:25,120
length movie in 2025 follow wakeupmaggymovie.com to find out more this did you know moment was provided

218
00:26:25,120 --> 00:26:33,600
by today's guest and is brought to you by royal hospice of organ so so let's get back to a little

219
00:26:33,600 --> 00:26:41,520
bit about you know you you brought mom home with you and you became you were not only a full-time

220
00:26:41,520 --> 00:26:50,320
caregiver to four or should I say five five boys including your husband right so you have five that

221
00:26:50,320 --> 00:26:55,840
you were caring for and then all of a sudden now you know what what does that feel like you know

222
00:26:55,840 --> 00:27:02,320
having to take on now your mom because you always looked here's the thing that is is really strange

223
00:27:02,320 --> 00:27:09,520
for me I always looked up to my mom as the caregiver and now the rules are reversed and it's such a

224
00:27:09,520 --> 00:27:16,720
weird place to be yeah it's so strange isn't it and it's like I think especially with the mom

225
00:27:16,720 --> 00:27:25,040
because our moms tend to be like the soft but I don't know if you had a good experience with your

226
00:27:25,040 --> 00:27:31,920
mom like they can be like such a soft yeah healing place for us and I remember thinking oh I'm

227
00:27:31,920 --> 00:27:37,840
I'm caregiving for the person that would be amazing as a caregiver the person that was an

228
00:27:37,840 --> 00:27:45,760
amazing caregiver and she also would be such a comfort to me in this crisis I wish I could lean on

229
00:27:45,760 --> 00:27:52,640
her but she's the one I'm caring for um yeah you know when we brought mom in to our home

230
00:27:52,640 --> 00:28:04,480
I think that I think my sister was in survival mode until she until we got mom to our house and I

231
00:28:04,480 --> 00:28:11,360
don't think my sister was in a place where she could really articulate like how progress moms

232
00:28:11,360 --> 00:28:17,280
needs were but I also think I think that it's kind of like any kind of growth or decline it's hard

233
00:28:17,280 --> 00:28:24,000
to see sometimes when it's right under your nose and so when mom came to our house she was way more

234
00:28:24,000 --> 00:28:30,720
progressed than I realized um pretty quickly realized she was dealing with incontinence like we

235
00:28:31,760 --> 00:28:40,080
she was in an unhealthy way eating so much food and drinking all of our beverages like right from

236
00:28:40,080 --> 00:28:46,880
in front of you kind of thing and I worried so much about her getting worse or sicker while she was

237
00:28:46,880 --> 00:28:56,720
with us I think that you know you think your kids don't notice but like so much of my kids like

238
00:28:56,720 --> 00:29:03,600
homework they would like turn in writing pieces that I would read later and see that it was like a poem

239
00:29:03,600 --> 00:29:09,680
about my mom living with us you know like you realize how affected they are by it as well

240
00:29:09,680 --> 00:29:19,360
um it was tough it was tough juggling all of that trying to keep my business afloat

241
00:29:19,360 --> 00:29:26,480
um yeah our kids were little angels about it all but um

242
00:29:26,480 --> 00:29:36,400
it felt like my mom was the most difficult of all to you know in the mix of having so many different needs

243
00:29:36,400 --> 00:29:45,280
and oh yeah yeah we were we were living off the fumes I think and we eventually did have to

244
00:29:45,280 --> 00:29:51,760
place mom in a home and it was a really really really tough decision but it was a better decision for

245
00:29:51,760 --> 00:29:57,680
all of us her care just became too much for us yeah the impact that that also would have on your

246
00:29:57,680 --> 00:30:04,640
children um you know talk a little bit about that is it was at a positive impact are they more

247
00:30:04,640 --> 00:30:13,760
empathetic um young people today or describe how that worked with them yeah I mean I definitely think

248
00:30:13,760 --> 00:30:20,640
that I saw so much support and empathy coming out from our kids I think they you know we we always

249
00:30:20,640 --> 00:30:27,760
say they like repeat what they see more than what they hear you know and I think what our kids

250
00:30:27,760 --> 00:30:33,920
watching us give care to our parents is a really beautiful thing um I definitely think that they were

251
00:30:33,920 --> 00:30:43,120
affected in the sense that you know they're already sharing parents you know by four so there's

252
00:30:43,120 --> 00:30:49,920
already a lot of children now hold where your children when um yeah my oldest was

253
00:30:49,920 --> 00:30:59,040
I want I want to say I should know these ages um I think my oldest was in seventh grade and then

254
00:30:59,040 --> 00:31:08,640
my and then we had fifth third and first yeah maybe kindergarten um so they were in primary

255
00:31:08,640 --> 00:31:17,680
schools yeah the mid junior high so yeah I mean those are those are tough years for your children

256
00:31:17,680 --> 00:31:23,280
just being able to identify who they are and as they're growing up and how they're fitting and then

257
00:31:23,280 --> 00:31:29,280
you insert mom into the picture yeah and you know sometimes the sometimes those are good things I

258
00:31:29,280 --> 00:31:37,440
I remember you know a TV show you you may be too old for you but um and many of our listening audience

259
00:31:37,440 --> 00:31:46,480
but the Walton's you know and it was you know families living within each in the household and

260
00:31:46,480 --> 00:31:51,920
oh the multi generations the multi generational thing that you know and that's there's some

261
00:31:51,920 --> 00:31:58,240
a lot of good things they can come out of that I think so too I think so too and you know we made

262
00:31:58,240 --> 00:32:04,000
the choice to move so far away from our family and that that has been hard but I so I do think like

263
00:32:04,000 --> 00:32:10,480
it's it's that bittersweet like I was I'm really I don't regret my children being around my mom

264
00:32:10,480 --> 00:32:15,280
in the last years of her life I do feel sad that it was when she was so ill and wasn't really

265
00:32:15,280 --> 00:32:24,400
herself but I think that it's a good excuse me my stomach is being very loud we're gonna cut that I do

266
00:32:24,400 --> 00:32:34,960
think that the experience for them 100% gave more compassion and empathy to people with any kind of

267
00:32:34,960 --> 00:32:43,040
mental health issues but also I just I felt so much strong support from our kids you know just

268
00:32:43,680 --> 00:32:50,000
whether it be like coming with me to visit mom or the support they gave when I was grieving losing her

269
00:32:50,000 --> 00:32:57,200
was huge too and these are great teaching moments too for empathy and for caring for one another and

270
00:32:57,200 --> 00:33:05,520
you know sometimes I think we've gotten away from that ability to train our children up and

271
00:33:05,520 --> 00:33:13,280
and being more responsible to you know the the down times of others were

272
00:33:13,280 --> 00:33:19,280
responding to you know everybody's challenges in life and so there's that empathy that can come out

273
00:33:19,280 --> 00:33:26,160
and children are amazingly resilient they really are yeah they can they can adapt they can adapt

274
00:33:26,160 --> 00:33:33,680
better than you and me totally yeah they're amazing for sure yeah it was a good I mean ultimately I

275
00:33:33,680 --> 00:33:39,200
think I think it's important our culture doesn't really have a way of processing death so much and we

276
00:33:39,200 --> 00:33:45,520
definitely don't feel comfortable talking about it so I think I think in some ways it's like a good

277
00:33:45,520 --> 00:33:54,560
thing for any of us to have to really deal with it to like be present in someone's death and loss

278
00:33:54,560 --> 00:34:04,800
in a way that it helps shape us in our in our life choices and then also just to know how you

279
00:34:04,800 --> 00:34:11,440
would want to process other loss in your future yeah yeah I was just looking at some of the other

280
00:34:11,440 --> 00:34:20,240
symptoms of you know FTD and you know one of those is the eating there's binge eating going on

281
00:34:20,240 --> 00:34:26,720
the high craving towards carbohydrates and sugars and things like that is it sounded like

282
00:34:26,720 --> 00:34:33,600
that's what your mom was battling with as well yeah for sure yeah I mean I heard compulsion control

283
00:34:33,600 --> 00:34:39,840
when when she was diagnosed and so I was like oh yeah that makes sense like she doesn't know when to stop

284
00:34:39,840 --> 00:34:47,280
you know with drinking or eating something so yeah yeah how about with any of the you know

285
00:34:47,280 --> 00:34:53,200
compulsive like repeating of words and phrases over and what did you experience that as well

286
00:34:53,200 --> 00:35:01,600
yeah my mom my mom would also like move I know your hears can't see my hands but she would just

287
00:35:01,600 --> 00:35:07,600
you know constantly like move her hands back and forth on top of each other and self-sue that way

288
00:35:07,600 --> 00:35:17,440
but she would repeat okay okay okay all the time yeah and she would say let's go all the time um

289
00:35:17,440 --> 00:35:24,400
she didn't want to be left alone very much and so she'd always try to go with me anytime I almost had

290
00:35:24,400 --> 00:35:31,680
to like try and leave where she wouldn't see so that she wouldn't try to go to um so yeah

291
00:35:31,680 --> 00:35:38,080
she definitely repeated the phrases so yeah and those are challenging I mean those behaviors

292
00:35:38,080 --> 00:35:46,080
and then how do you respond what did you learn from those those days and how to respond and

293
00:35:46,080 --> 00:35:53,440
to diffuse you know some of the behaviors and it's a real art and there's never

294
00:35:54,320 --> 00:36:01,200
there's you know there's not really any consistency in because they are such challenging behaviors

295
00:36:01,200 --> 00:36:08,240
so how did you deal with all yeah I mean sometimes you know you have to make difficult choices for

296
00:36:08,240 --> 00:36:15,440
un safety like we were we were like we have to get a fridge that we can lock because mom will drink

297
00:36:15,440 --> 00:36:23,600
everything um which is just like you think that's not good like she came to dinner one time with

298
00:36:24,480 --> 00:36:30,720
a glass full of what looked like milk and I knew we didn't have any milk and so super confused

299
00:36:30,720 --> 00:36:36,240
and I was like what do you have and as soon as I asked her what she had she like drank it all the way

300
00:36:36,240 --> 00:36:42,720
down and then I realized it was coffee creamers half and half and I'm like oh my gosh like I'm

301
00:36:42,720 --> 00:36:50,400
just imagining that like sitting on your belly like a full glass of half and half um so like you know

302
00:36:50,400 --> 00:36:58,960
choosing tough things like buying a fridge that we could lock but also um trying to

303
00:36:58,960 --> 00:37:06,400
just sit with her and be with her and figure out like something she could do um you know we tried

304
00:37:06,400 --> 00:37:12,080
to I remember like I was making Christmas cards sending Christmas cards and so I'd have her

305
00:37:12,080 --> 00:37:17,680
like stick the dress or the stamps on them just to give her allow her to participate and give her

306
00:37:17,680 --> 00:37:24,720
something she could do um but I wish I could say I was like incredibly patient with her but I

307
00:37:24,720 --> 00:37:30,160
there are plenty of times where I would feel really frustrated and I might have to just like remove

308
00:37:30,160 --> 00:37:38,240
myself from from the scenario because I because like I said earlier like as it as her daughter you're

309
00:37:38,240 --> 00:37:45,760
it's it brings up anger because fear and sadness are harder to access for us so if we

310
00:37:46,400 --> 00:37:52,720
if we get angry it's because we're feeling that fear and sadness um but with her I'd be like why are

311
00:37:52,720 --> 00:37:59,440
you doing that you know um because I didn't understand as fully as I could have what we've been

312
00:37:59,440 --> 00:38:06,000
dealing with so yeah and I think that it's tough yeah caregivers that dealt children of you know as

313
00:38:06,000 --> 00:38:11,920
caregivers to mom and dad oftentimes feel the guilt of the shame and the judgment and you know

314
00:38:11,920 --> 00:38:18,240
because you feel like oh I'm not doing enough or I'm not doing it well enough and how did you deal with

315
00:38:18,240 --> 00:38:24,880
all of that did you did you have support systems in place did you have an outlet um you know other

316
00:38:24,880 --> 00:38:30,800
than say your business I mean that isn't out that but where there are other things friends whatever

317
00:38:30,800 --> 00:38:37,840
you know I think I think this is the hardest part about caregiving is you're so stretched then

318
00:38:38,480 --> 00:38:46,080
in your in crisis it feels like all the time putting out fires I this is kind of maybe this is bizarre

319
00:38:46,080 --> 00:38:51,840
or less common but I one thing that felt like a good outlet to me is I would and I didn't realize

320
00:38:51,840 --> 00:38:59,680
that the SunTay did it but I posted a thing on on social media and just hashtagged dementia socks

321
00:38:59,680 --> 00:39:08,400
or something like that and people started commenting or connecting that way and I realized oh

322
00:39:08,400 --> 00:39:16,400
other people understand what I'm going through and I felt less alone um so sorry definitely think

323
00:39:16,400 --> 00:39:24,240
that that helped like reaching out and sharing a little bit of my story just as a way to feel like

324
00:39:24,240 --> 00:39:30,480
less invisible in it and less lonely in it and then connecting with people through that through

325
00:39:30,480 --> 00:39:36,640
that sharing was really really powerful and honestly it was that connection that made me realize

326
00:39:36,640 --> 00:39:43,360
I wanted to make films about this this topic and like because I realized if if connecting with one

327
00:39:43,360 --> 00:39:49,600
person on our story was that helpful to me how much more helpful would it be to make a film

328
00:39:49,600 --> 00:39:53,920
where who knows who can watch it where can go into people's living room and they feel like

329
00:39:53,920 --> 00:40:01,040
their lives are being expressed that they can see their experience being lived out on the screen

330
00:40:01,040 --> 00:40:09,120
says highly motivating and then the other the other thing that helps me with the guilt that you asked

331
00:40:09,120 --> 00:40:16,240
about is maybe this is particular to me and my mom but when I would feel like I was so

332
00:40:16,240 --> 00:40:24,160
overwhelmed by my own lack of ability to love or care for her in the way that I really really

333
00:40:24,160 --> 00:40:33,840
wanted to I thought about my mom would be the first person to forgive me the first person to say it's okay

334
00:40:33,840 --> 00:40:42,800
yeah and I think I think just allowing myself to feel that love and to know that she would have

335
00:40:42,800 --> 00:40:50,480
given me that the very person I was trying to love was like super healing to me and I'm like if

336
00:40:50,480 --> 00:40:58,480
mom could forgive that then I can forgive myself for not living up to the way I wanted to do things

337
00:40:58,480 --> 00:41:05,200
and some of the things that I've heard since then because it has been eight years since I've lost

338
00:41:05,200 --> 00:41:12,160
my mom but one of the things I heard is like it's more regret than it is guilt because regret is

339
00:41:12,160 --> 00:41:20,320
about how we wish we could have loved yeah yeah and well said you know it's it's that that

340
00:41:20,320 --> 00:41:29,200
regret sometimes those negative thoughts overtake us and it's really important to you know keep

341
00:41:29,200 --> 00:41:35,360
a sound mind and to keep everything into perspective and I love the way you said that because you

342
00:41:35,360 --> 00:41:43,520
knew your mom your mom knew you and moms are great at forgiveness they really are yeah I have to

343
00:41:43,520 --> 00:41:50,720
cough one more time that's all right that's okay I'm not like trying to cycle the cry you know it makes

344
00:41:50,720 --> 00:41:58,160
you get choked up and more though things and all yeah but one of the things that you write about

345
00:41:58,160 --> 00:42:04,800
is you know well let me back up a little bit so I was asking you about what your outlets were

346
00:42:04,800 --> 00:42:09,120
you know did you have friends because a lot of people have friends some people have you know

347
00:42:09,120 --> 00:42:17,040
those spiritual group of people around them with church or various or maybe even at the hospital

348
00:42:17,040 --> 00:42:24,880
they had F.T.D. groups support groups and there's all kinds of ways to to have your outlet to

349
00:42:24,880 --> 00:42:32,080
keep your sanity and one of the things that was intriguing about your story is that you were an

350
00:42:32,080 --> 00:42:40,960
actress and as an actress then you became a filmmaker and now this is your outlet to begin to

351
00:42:40,960 --> 00:42:48,640
let all of those things out and to help others walk through this the most difficult journey of F.T.D.

352
00:42:48,640 --> 00:42:57,200
and so talk a little bit about that expression for you you know not everybody can be a film director

353
00:42:57,200 --> 00:43:02,080
not everybody can be an actress well I guess we're all actors and actresses in this world but

354
00:43:02,080 --> 00:43:05,280
you know but this is unique to you

355
00:43:05,280 --> 00:43:16,560
yeah what a wild turn of events I started acting after I lost my mom to F.T.D.

356
00:43:16,560 --> 00:43:26,080
and I will say the first step or the first outlet was that I remember thinking so much about

357
00:43:26,080 --> 00:43:34,960
life is short and I was like why not try any things why not live why not grow and stretch myself and

358
00:43:34,960 --> 00:43:43,840
do things that scare me and so I I started acting and I was terrified because you know what very

359
00:43:43,840 --> 00:43:53,360
it's such a public outform sorry it's such a public art form you can't just paint in your back room

360
00:43:53,360 --> 00:43:58,720
and then nobody sees it if you're gonna act whether it's acting class or any kind of film or on camera

361
00:43:58,720 --> 00:44:05,760
or stage performance people are gonna see it and people get really nervous for you when you try

362
00:44:05,760 --> 00:44:11,120
to take a risk like that like a really public risk they project their fears onto you and

363
00:44:11,120 --> 00:44:20,000
react all sorts of ways so started acting very quickly into that journey I thought I wanted to try

364
00:44:20,000 --> 00:44:27,280
my hand at filmmaking and like I said earlier I thought what a beautiful way you started you started

365
00:44:27,280 --> 00:44:34,160
acting at not you weren't in your teens you weren't a child actor you you you you started later in

366
00:44:34,160 --> 00:44:42,960
life correct is is that correct yeah and what age were you what was that in your 30s your 40s

367
00:44:44,080 --> 00:44:50,880
I don't know I started after I that's okay I normally don't I don't always share my age I don't

368
00:44:50,880 --> 00:44:56,240
I love aging I said a privilege but I don't share my age because of acting like I want to be cast

369
00:44:56,240 --> 00:45:02,880
and how old I think I think it's in sure and I think it's inspiring for people that you know it's

370
00:45:02,880 --> 00:45:10,400
it doesn't matter age is a number and it doesn't really matter when you started it's that you started

371
00:45:10,400 --> 00:45:17,440
it's not that you it's it's getting to the starting line in a race it's it's just showing up

372
00:45:17,440 --> 00:45:27,040
first of all yeah so so then in mid this is more mid life for you that this came about

373
00:45:27,040 --> 00:45:31,440
and there's a big risk

374
00:45:36,560 --> 00:45:43,520
and so I am losing you I think oh no I'm I was just waiting for your response so it was a big risk

375
00:45:43,520 --> 00:45:50,560
for you to start a career in acting you started a career and then it evolved into filmmaking and then

376
00:45:50,560 --> 00:46:01,040
you've taken your mom's story and you've woven that into your craft yes yes yes yes so in some ways

377
00:46:01,040 --> 00:46:06,640
acting was a big risk right because it's vulnerable but in other ways it's not a big risk at all

378
00:46:06,640 --> 00:46:12,800
because what do we have to lose you know it's like I've already have a full life I have a beautiful

379
00:46:12,800 --> 00:46:19,680
family I have a career that I love doing portrait photography why not try new things so I started

380
00:46:19,680 --> 00:46:25,120
I started acting and yeah it was a risk but not really because I feel like I none of us really

381
00:46:25,120 --> 00:46:32,400
have anything to lose when it's all said and done you know so the first the I made my first film

382
00:46:32,400 --> 00:46:42,640
loosely based on my experience with mom's dementia and that was in 2020 and so that film was very

383
00:46:42,640 --> 00:46:49,040
like you said it was a way for me to process my own experience my own grave and also connect with

384
00:46:49,040 --> 00:46:54,000
this community and hopefully create something that helped other people and help people fill less alone

385
00:46:54,720 --> 00:47:00,080
I thought that I would make that film and that would be it and we would we would be like oh we made a

386
00:47:00,080 --> 00:47:06,000
film about dementia and I didn't know that I would want to like work in that space more because it does

387
00:47:06,000 --> 00:47:14,400
it does cause me and force me to really deal with my own grief and deal with my own experience

388
00:47:14,400 --> 00:47:23,200
in a deep way so it's it's deeper work is what I would call it but um what was the title of the film

389
00:47:23,680 --> 00:47:31,680
that's called front porches okay and this was centered in foundational to your mom's experience

390
00:47:31,680 --> 00:47:40,560
of living with FTD correct yeah I centered that story specifically on two neighbors

391
00:47:40,560 --> 00:47:44,960
and their connection to each other because we filmed it in the pandemic and I was like

392
00:47:44,960 --> 00:47:50,720
this is so important that we actually know our neighbors that we know how to rely on people

393
00:47:50,720 --> 00:47:55,760
that we can have a chosen family sometimes it doesn't always have to be our immediate family

394
00:47:55,760 --> 00:48:03,360
and um it was two women who became like mother daughter to each other and they both were experiencing

395
00:48:03,360 --> 00:48:10,640
neglect in their lives and they leaned on each other and what happened is um they both started

396
00:48:10,640 --> 00:48:18,320
noticing some mental issues some decline and a mental decline in the older neighbors life

397
00:48:19,040 --> 00:48:26,400
and so it was really focused on those beginning stages of dementia where you see someone you love

398
00:48:26,400 --> 00:48:33,680
starting to behave differently or like miss things or feel confused and so I really wanted to just

399
00:48:33,680 --> 00:48:39,360
highlight creative short film just on that beginning phase where you don't quite know what's going on

400
00:48:39,360 --> 00:48:47,360
and um you know help people feel like oh I can recognize that I remember how confusing that time

401
00:48:47,360 --> 00:48:51,600
was when you're not sure what's going to happen or how you're going to care for this person

402
00:48:51,600 --> 00:48:59,760
so front porches is just a little slice of that um so it's a 18-minute long film and it was your first

403
00:48:59,760 --> 00:49:08,720
attempt um it's nice first film yeah well done thank you thank you and and honestly um you know

404
00:49:08,720 --> 00:49:12,960
when you've never done something like that I'm like I hope I can finish this or my goal is to finish

405
00:49:12,960 --> 00:49:19,120
this and it's good but it ended up way better than I ever imagined and I think the thing is is that

406
00:49:19,120 --> 00:49:25,920
film continues to have an impact and that continues to cause I mean people still reach out and say

407
00:49:25,920 --> 00:49:32,800
can I see your film and I'm like what you know like it's not even like on any kind of platform like

408
00:49:32,800 --> 00:49:37,520
a streaming network or anything you know and people want to see it so I think because of the

409
00:49:37,520 --> 00:49:45,200
nerve that that touched I really felt like a calling to create a full-length movie um about the same

410
00:49:45,200 --> 00:49:51,520
thing I caregiving dementia I felt like I can one is I thought I can do more and I thought I could do

411
00:49:51,520 --> 00:50:01,840
better than that first attempt um and as as I've grown as an artist but also as I've grown in like my

412
00:50:01,840 --> 00:50:08,480
understanding of the whole process of what I went through with mom I was like okay I I think I can write

413
00:50:08,480 --> 00:50:16,960
a full I want to make a full-length film want to make a full movie um I needed to figure out the story

414
00:50:16,960 --> 00:50:22,560
because it's a different that wake up Maggie is what I'm working on now it's my full-length movie

415
00:50:22,560 --> 00:50:28,400
and it's a different context it's a different story it's a different relationship however it's

416
00:50:28,400 --> 00:50:37,280
going to really highlight caregiving and specifically FTD in some similar ways um so the stories are

417
00:50:37,280 --> 00:50:42,640
completely different between front porches and wake up Maggie but I will say like the truth of both

418
00:50:42,640 --> 00:50:50,080
of the stories are the same um because it's based on what I know and it's all very true things

419
00:50:50,080 --> 00:50:58,080
that have happened so you you write about um how this was a wake up call for you in in the process

420
00:50:58,080 --> 00:51:05,600
what were you waking up from and I was curious about what what was your life like where

421
00:51:05,600 --> 00:51:12,400
then there's that the bell was ringing and we all have those moments in our lives and we all wake up

422
00:51:12,400 --> 00:51:19,440
hopefully you know not all of us but hopefully we will and and our those are life changing moments

423
00:51:19,440 --> 00:51:27,040
who was that like uh I mean my wake up call was about being busy being born Mark I um

424
00:51:27,760 --> 00:51:34,720
I this is this is what's so beautiful is wake up Maggie is such a reflection on my life set

425
00:51:34,720 --> 00:51:41,680
in a fictional context but it's about it's about moving through midlife feeling like you have a sense

426
00:51:41,680 --> 00:51:48,320
of control you kind of know what's what you can kind of like hold everything together until you can't

427
00:51:48,320 --> 00:51:56,640
and often caregiving or great loss is the thing that makes us realize we can't we don't control the

428
00:51:56,640 --> 00:52:05,280
things that we're thinking we can control and I think letting go of trying to control what I cannot

429
00:52:05,280 --> 00:52:12,400
control and moving into acceptance of the things I can't control was like the most peaceful like

430
00:52:12,400 --> 00:52:21,120
the most peace inducing lesson that's the hardest to learn I'm still learning it all the time um

431
00:52:21,920 --> 00:52:29,520
so I think for me I look about I look at this journey and I say this in my film with wake up Maggie too

432
00:52:29,520 --> 00:52:39,040
it's about being unraveled in midlife it is about life circumstances coming at you and we have a choice

433
00:52:39,040 --> 00:52:48,800
we can become stiffer we can become a little more closed we can become as uh escape seekers comfort

434
00:52:48,800 --> 00:52:56,720
seekers or we can lean in feel what we need to feel and let it strip away all those layers that don't

435
00:52:56,720 --> 00:53:04,160
really serve us anymore for me that was a lot of people pleasing that was a lot that was a high lack of

436
00:53:04,160 --> 00:53:16,880
boundaries in my life um it was putting every single person first besides me it was um you know constantly

437
00:53:16,880 --> 00:53:22,720
choosing what I was gonna do based on the fictional question of what other people would think

438
00:53:22,720 --> 00:53:30,640
and all of those things were I mean in a lot of ways those things are still at my core they're still

439
00:53:30,640 --> 00:53:35,600
like kind of my identity you know I think people pleasers are often like really easy people to be

440
00:53:35,600 --> 00:53:42,640
all around because we know how to work the room in the negative sense it's like we lose ourselves

441
00:53:42,640 --> 00:53:49,920
in the positive sense we like can be really winsome so I think for me that journey of losing my mom

442
00:53:49,920 --> 00:53:56,000
and some other grief that has happened in my life is more about giving me the ultimate clarity of

443
00:53:56,000 --> 00:54:03,440
how I want to live the ultimate clarity of I want presence I want acceptance I want to do things

444
00:54:03,440 --> 00:54:12,480
that scare me I want to love people as big as I can while I can and and so making a movie is

445
00:54:12,480 --> 00:54:18,320
such a huge endeavor it's like I we joke my husband I joke about how it feels like

446
00:54:18,320 --> 00:54:25,920
planning a wedding starting a business and moving all the same time you know and um it's it's

447
00:54:25,920 --> 00:54:32,960
wild but it's so exciting too it's exciting to do things that you don't know if you can do

448
00:54:32,960 --> 00:54:41,680
I think there's a lot of wisdom in that um you know I think I was cure as I was listening to you I was

449
00:54:41,680 --> 00:54:50,080
you know thinking about all of us are looking for meaning in life we're looking for purpose in life

450
00:54:50,080 --> 00:55:00,480
and you know sometimes these events reshape our minds and our thoughts about what is really important

451
00:55:00,480 --> 00:55:06,880
in life and what is the meaning for life and I was reminded of as you were talking there is

452
00:55:06,880 --> 00:55:14,720
reminded of the in the book of ecclesiasties it's it it when I first read this I was like how morbid

453
00:55:14,720 --> 00:55:23,360
but it says it's better for a man man in not just gender but man to go to a house of mourning

454
00:55:23,360 --> 00:55:30,640
than it is to go to a house of parting and I go really that's so that's so morbid you know but

455
00:55:31,280 --> 00:55:39,040
really what the intent behind that when we go through life changing tragedies and we see life limiting

456
00:55:39,040 --> 00:55:46,640
experiences in in our own lives with through other people that's a great opportunity to find out

457
00:55:46,640 --> 00:55:53,600
what is really the purpose and why we're here on this earth and who are we and that's why it's

458
00:55:53,600 --> 00:55:58,480
better to go to a house of mourning than it is to go to a house of parting because when you're

459
00:55:58,480 --> 00:56:04,080
going to a party it's all about me and it's what's about fun and which is not to say that there's

460
00:56:04,080 --> 00:56:11,120
nothing wrong with that but but really the deeper meaning of life is about finding out who you are

461
00:56:11,120 --> 00:56:20,240
and you know sometimes I think we often look at and I'm just throwing this out just yeah I want

462
00:56:20,240 --> 00:56:27,440
you to respond on it but when we go through tragedies in life and we have to experience other people's

463
00:56:27,440 --> 00:56:36,320
tragedy like your mom sometimes if we just look at those as gifts you know back not for her

464
00:56:36,320 --> 00:56:44,240
but a gift back to us and those were life changes you said that you woke up yeah this was a wake-up

465
00:56:44,240 --> 00:56:49,920
moment for you and I look at different places in my life where I had the same thing where these

466
00:56:49,920 --> 00:56:57,280
were wake-up moments yeah absolutely I mean I think you're so right and I think especially like

467
00:56:57,280 --> 00:57:06,640
thinking about my mom being diagnosed at 62 you think you watch your your mom or your parent

468
00:57:06,640 --> 00:57:14,800
or your loved one decline like that and you're like that's not that far away so how do I want to live

469
00:57:14,800 --> 00:57:22,880
and I think for me it's also contemplating the reality that we could have a genetic strain with FDD

470
00:57:22,880 --> 00:57:32,080
so what if I got diagnosed with FDD it's it's facing that fear and saying oh I know if I can't

471
00:57:32,080 --> 00:57:39,360
I can't control that but if I did what would I do how would I live my life and I'm trying to choose

472
00:57:39,360 --> 00:57:47,040
that regardless of whether I had a diagnosis or not and to your point about your ecclesiasties verse

473
00:57:47,040 --> 00:57:52,640
about the House of Parties our House of Morning I just was making myself run the other day and

474
00:57:52,640 --> 00:57:57,760
I don't like running at all but I was like I'm gonna go out and run I join you in that I hate running

475
00:57:57,760 --> 00:58:03,440
I was like I would rather do every other type of exercise and I love movement and I'm a huge

476
00:58:03,440 --> 00:58:10,480
like supporter of like healthy choices and stuff but I'm like oh running but I was like I'm gonna see

477
00:58:10,480 --> 00:58:15,200
if I can do it because I want to feel alive like I think about that a lot I want to feel alive so I

478
00:58:15,200 --> 00:58:21,200
went for a run and I went and I ran through our local cemetery that happens to be beautiful with

479
00:58:21,200 --> 00:58:26,240
like the trees and everything and I was like I'm running because I'm not dead yet this is why I'm

480
00:58:26,240 --> 00:58:32,000
running today and like nothing like running through a cemetery to remind yourself that you can go

481
00:58:32,000 --> 00:58:37,440
a little bit further right because you're not dead yet that's a great perspective I loved that I

482
00:58:37,440 --> 00:58:44,080
I'm a huge supporter of I love going to cemeteries and sound that again sounds morbid but I enjoy

483
00:58:44,080 --> 00:58:50,560
going to the tombstones and seeing what people write on their tombstones because these were real people

484
00:58:50,560 --> 00:58:57,440
right and they had real lives and they were gifted and talented and they went through time

485
00:58:58,160 --> 00:59:06,320
and I just it's just fascinating to see and I love the epitats that people write yeah probably the one

486
00:59:06,320 --> 00:59:14,640
epitat that I've enjoyed the most reading is in a windswept cemetery in eastern Oregon

487
00:59:14,640 --> 00:59:25,920
and on this tombstone he writes she's gone and oh how I miss her and I go wow that's my epitat

488
00:59:26,640 --> 00:59:34,000
I want to be missed I you know and what a great honor to be able to have that on your tombstone

489
00:59:34,000 --> 00:59:40,720
that you were such a great human being that people now miss you yes that's really it's so like

490
00:59:40,720 --> 00:59:48,320
simple and profound at the same time right yeah yeah move those just those those moments where you

491
00:59:48,320 --> 00:59:58,400
just take that you go yes yeah yeah yeah so tender so is there anything else that you want us to go

492
00:59:58,400 --> 01:00:12,480
away with you know any thoughts any parting thoughts um I mean I just I I hope I hope that people

493
01:00:12,480 --> 01:00:21,760
will just give them themselves permission to live I feel very aligned with your message of um you

494
01:00:21,760 --> 01:00:28,800
know it sounds so cliche to be like life is short or you only live once or yeah any of those

495
01:00:28,800 --> 01:00:35,840
statements but I think um anytime we have close proximity to someone's end of life I think we

496
01:00:35,840 --> 01:00:45,680
all reminded of that and um obviously I want people to like I'm such a believer in like trying new

497
01:00:45,680 --> 01:00:51,280
things and putting yourself out there because you never know how you might succeed and might what

498
01:00:51,280 --> 01:01:00,320
might work out for you um and then beyond that that's what I hope my life will inspire for others

499
01:01:00,320 --> 01:01:07,120
but beyond that I really want people to check out our movie for sure um because that's so important to

500
01:01:07,120 --> 01:01:14,480
me I just am pretty obsessed with it right now Mark yeah well and it's a way for you to give back

501
01:01:14,480 --> 01:01:22,560
for for for the life that your mom had lived it was a way for you to give back to help others experience

502
01:01:22,560 --> 01:01:28,720
the joys and the heartaches and all the things that are wrapped up in that yes there's it's a it's a

503
01:01:28,720 --> 01:01:35,920
it's a gift but it's it's not always an easy one to receive but yeah yeah that we can all learn

504
01:01:35,920 --> 01:01:42,560
and we can and in the end it's about the purpose and meaning of life right who do we want to become

505
01:01:42,560 --> 01:01:51,200
yes and I and I think like to your point our stories matter our stories matter sharing our stories matter

506
01:01:51,200 --> 01:01:57,600
um I mean you know that as a podcaster like how many stories you get to hear and share with the

507
01:01:57,600 --> 01:02:04,880
world at such a beautiful gift but I think for me like I really do hope this film and believe that

508
01:02:04,880 --> 01:02:12,960
this movie wake up Maggie will be healing and hopeful to a lot of people who feel very alone

509
01:02:12,960 --> 01:02:19,120
and very invisible in their in their life right now so I can't wait for the world to have it

510
01:02:19,120 --> 01:02:26,800
yeah when is it coming out do you have a we're we're hoping to film in February of 2025 so

511
01:02:27,680 --> 01:02:33,440
we'll be filming it next year and then it will probably take about a year for post-production

512
01:02:33,440 --> 01:02:44,720
so movies are a long marathon of love yes they are yeah all right well good luck with it and

513
01:02:44,720 --> 01:02:51,520
we wish it well and the whole process and because it it will be a gift to the rest of us

514
01:02:52,480 --> 01:02:58,400
thank you mark i really appreciate that it's definitely definitely my calling um in life so

515
01:02:58,400 --> 01:03:04,960
feels good to get to do work that i love this much and you have a website that people may want to go to

516
01:03:04,960 --> 01:03:10,640
that where they can find your other movie uh what was it the something about the purchase

517
01:03:10,640 --> 01:03:16,480
front-portches front-portches sorry about that yeah you're all good and then um and then they can

518
01:03:16,480 --> 01:03:23,680
follow you along the way what's what's your website um the easiest website to remember is just my name

519
01:03:23,680 --> 01:03:31,200
katie printis.com um we also have a website for wake up Maggie it's at wakeupmaggymovie.com

520
01:03:31,200 --> 01:03:37,600
and we're on all the social media as well under wake up Maggie movie so try to make it as easy as

521
01:03:37,600 --> 01:03:42,880
possible for people to find us all right well we'll be looking forward to it coming out and uh

522
01:03:43,840 --> 01:03:50,240
katie once again thank you so much for being on the podcast aging today thank you so much for how do you

523
01:03:50,240 --> 01:03:55,440
mark all right it was a pleasure this is mark turntable your host and i want to thank all of you for

524
01:03:55,440 --> 01:04:02,880
tuning into aging today and we are the podcast where together we're exploring the many options to

525
01:04:02,880 --> 01:04:10,720
aging on your terms join us every monday when we release a new conversation on aging today to your

526
01:04:10,720 --> 01:04:17,440
favorite podcast channel and remember this we're all in the process of aging and as we age

527
01:04:17,440 --> 01:04:22,080
we really are better together so stay young at heart

528
01:04:22,080 --> 01:04:31,120
you make me feel so young you make me feel like spring has come and every time i see your face

529
01:04:31,120 --> 01:04:40,000
i'm such a happy individual the moment that she's speed i want to go play hide and see

530
01:04:40,880 --> 01:04:51,600
i want to go and bounce the moon just like a toy balloon well you and i i'll just like a bullet

531
01:04:51,600 --> 01:05:01,200
dot running across the metal big enough lots of forget me not so you made me feel so young

532
01:05:01,200 --> 01:05:08,800
you made me feel there are songs to be sung there will still be rung and wonderful thing to be

533
01:05:08,800 --> 01:05:16,240
fun and you know when i'm old and grey you've been listening to aging today where together we

534
01:05:16,240 --> 01:05:22,400
explore the options to aging on your terms join mark in his guest next week for another lively

535
01:05:22,400 --> 01:05:29,360
discussion on proactively aging on your terms connecting you to the professional advice of his special

536
01:05:29,360 --> 01:05:35,120
guests with the goal of creating better days throughout the aging process your host has been

537
01:05:35,120 --> 01:05:41,200
marked turnbull join mark in his guest every week on aging today your podcast to exploring your

538
01:05:41,200 --> 01:05:50,080
options for aging on your terms and you when i'm grey you make me feel the way i feel today

539
01:05:50,720 --> 01:06:14,400
because you make me feel so you make me feel so you make me feel so young so young you make me feel so young