Flying Blind | Unseen Heroes Podcast

Description

"Our third episode is truly special. We sit down with my dear friend Amy and her mother Tori, who open up about the particular anguish of navigating a serious illness — one with visible, debilitating symptoms and yet no diagnosis, no roadmap, no one to warn them how messy and demanding the journey ahead will be. They speak honestly about fear, sacrifice, and struggle, but also about the love and laughter that carries them through — all while flying blind."

Hosted on Ausha. See ausha.co/privacy-policy for more information.

Transcription

Speaker #0
Hi, listeners, and welcome to another episode of Unseen Heroes, a podcast by a caregiver for caregivers. My name is Aliette, and I was once my mother's caregiver. Welcome to Unseen Heroes podcast. Today's episode is very dear to me. And I have been looking forward to this moment since this past summer. Amy, say hi, Amy.
Speaker #1
Hi, everyone.
Speaker #0
Is one of my ride or die friends from forever. You know, the kind of friend that shows up when you call with a shovel. No questions asked, except for where do I start digging? And Tori is the superwoman who created Amy. But I've never had the privilege to meet until now. Welcome, Tori.
Speaker #2
Thank you. Good to see you.
Speaker #0
Good to see you as well. So you're here today clearly because you're going through a caregiving journey.
Speaker #2
Yes.
Speaker #0
Would you like to explain to us what's going on?
Speaker #2
Well,
Speaker #1
so my stepfather, just to give a little background, had a stroke about 20 years ago.
Speaker #2
I wrote about that too.
Speaker #1
Yeah. And, um... That did cause some mental, how would you say that, mom? Some loss of hesitations. Right. And so there's been a slow progress of him losing some capabilities from that. And then, this is going to have to be edited. I was living abroad for about eight years while my parents were living in Santa Fe, New Mexico. Moved back to the U.S. and my mom was needing some assistance in her caregiving for my stepfather. So we moved them up to the northeast and they are now living in an apartment attached to us. And just to be a support as she tries to sort this out, take care of him.
Speaker #0
Now, I remember this entire transition because, Amy, we sort of lived it together as friends.
Speaker #1
Yeah.
Speaker #0
I'll be back in a minute. Amy and I left Switzerland at the same time. We moved to the East Coast together. She was happy to be close to family. And then I remember the priority when you were looking for a home was to be able to move your mom up with you.
Speaker #1
Yes. Yeah, it was. It was.
Speaker #0
Which is admirable. Not many people put that as a priority.
Speaker #1
Thank you. I know you did the same.
Speaker #0
So did, but it's just for caregivers to know that every. Every thought, every priority is special because not everyone does them.
Speaker #1
Exactly. Yeah.
Speaker #0
So, and then you did find a beautiful home that you loved.
Speaker #2
Yeah.
Speaker #0
And now mom has moved up with you. How is that going?
Speaker #2
I think it's going well. It was certainly a big shift, Santa Fe to Maryland. It was one of those things that. I knew I had to do. And as I recall, my previous therapist that I had said, you know, you have this knack for putting your head down and moving into the wind and doing what you had to do. And I just, I knew that at some point, because again, it's still flying blind. I'm sort of guessing at some of this. And... But I knew that if we didn't move soon, I might lose that window of opportunity to make the transition. And being familiar with the East Coast, having grown up here, and the additions of being able to be with a near family. I have other family here on the East Coast. And to watch and be with our granddaughter, our youngest granddaughter, as she prepares to... go on to college in a year. So it seemed like there were lots of layers, although, you know, there's that part being under the covers and waking up and saying, what in the name of God am I doing? I barely have energy for what I can see down the road, but it's what we had to do. And so glad that we did. And Tori, what does your husband suffer from? We don't as yet have a diagnosis.
Speaker #0
But how long has he been sick?
Speaker #2
Well, it's hard to say because, and I wrote about this in my little blip, because of his stroke,
Speaker #1
where he already lost some mental function, some memory, short-term memory from the stroke. It was, I hate to use what I wrote about, but it was really hard to tell what was just residual from the stroke and progressing as he aged. And where we needed to kind of intervene, like, oh, wait, this is no longer stroke side effects. We need to jump in.
Speaker #0
How long have you been his cerebral caregiver?
Speaker #2
I would say there have been tiny bits of it since his stroke. Which was? 2007. But then within the last couple of years, it's gotten to be more and then it seemed to pick up some momentum. And, you know, perhaps it was that I was so close to it that some of it I just, you know, that's Jim.
Speaker #1
I'd say for a good two years, you've had to do a lot more. And then within the last six to 12 months, you've had to take over the finances. Jimmy can't. drive. So mom is in charge of all of that.
Speaker #0
And Amy, I remember you telling me he has sundown syndrome as well. No?
Speaker #1
Yeah, yeah, exactly. I think so I was told by a doctor, a friend who's a physician that to expect some changes with the mood because they people with any type of dementia will get disoriented from a large, you know, a big move. And um So I've seen that and I definitely see the sun downing when he gets quite confused when things get dark.
Speaker #0
So let me bring this back to you two, because you're bearing the brunt of it. You, Tori, have left your home of Santa Fe, your friends, everything that you know.
Speaker #2
Yes.
Speaker #0
Everyone around you to move with your daughter because you needed the help. And you, Amy, are. supporting your mom, your stepdad, working part-time, supporting your daughter who's soon to go to university, and also supporting your husband who I know is not permanently there. He travels in and out, back and forth.
Speaker #2
Yeah.
Speaker #0
And you're also a grandmother of recent. So you also have a billion plates to take care of.
Speaker #2
Absolutely.
Speaker #0
And here we are in the shit sandwich of caregiving.
Speaker #2
Oh,
Speaker #1
yes. It is overwhelming. It's a lot.
Speaker #0
So my point with that is, I love that you came up with the prompt and I did not. Because sometimes I tend to come up with the prompt, but you two fabulous ladies came up with your own prompt of flying blind.
Speaker #1
Yes.
Speaker #0
Who wants to go first?
Speaker #1
I'll go first. Mine's very short, so I will read mine. Flying blind. It's been difficult to jump in and know where to begin supporting my mom as she cares for my stepfather. I've been catching up on where he is physically and mentally since they moved here and what next steps should be put in place. I think out of fear of the reality and gravity of the situation, my mom hasn't pursued a diagnosis or evaluation. It's also complicated by the stroke he suffered 20 years ago and figuring out what is just residual from that. So it's been hard to assess where we are now and how to move forward. I have realized over the last few months that it's important to ask her occasionally what she needs instead of making assumptions. And being patient when she isn't ready to tackle an issue. The move up to us was huge for them. And they need space to adjust and settle in. As well as all of us. Finding our comfort zone as we live together once again. I do feel sadness or anger at the situation that keeps me from having my mother more to myself.
Speaker #2
And I want to go places and share experiences with her. Wait, can we just, I don't want to bawl.
Speaker #0
No, you bawl because caregivers bawl. I used to bawl in the corner almost every day.
Speaker #1
and share experiences with her that she just can't participate in as a caregiver. I also try hard not to snap at my stepdad for consuming so much of her time. I remind myself frequently that he isn't doing this or that on purpose when he forgets. And treat him as an adult, not a child, despite it feeling like the responsibility of a young child at times. It's hard to face the reality of your parents aging and watch dementia take hold of a parent. I also remind myself that... It's important to allow my mom and all of us to feel grief, even though it's not a death, it's still a loss.
Speaker #0
The conflicts that you described, push and pull, the struggle of your mom being healthy, but having these responsibilities of not getting angry with your stepfather, of all the nuances and the emotions and the push and the pull. And the grace that you have to give each other.
Speaker #2
Yeah,
Speaker #1
absolutely.
Speaker #0
Tori, how did it feel listening to that for the first time?
Speaker #2
It was very powerful. And so appreciate that. Because, you know, in everyday life, it isn't like some made-for-TV movie. So, I mean, they're probably things that I would have known or felt or assumed for Amy. But hearing her say that, it brings sadness, but it's also an affirmation of the caring and, you know, why she slept all the way out there and got on the plane with us and brought us back.
Speaker #0
Oh, Amy, I feel it. And Hori, I understand so deeply because when you're a mom and Amy, you're a mom as well, you're always a mom.
Speaker #2
Yeah.
Speaker #0
Regardless of what age.
Speaker #2
Exactly.
Speaker #0
To protect your children.
Speaker #2
Yes, exactly. Yeah.
Speaker #0
Even when your children are old enough to protect you.
Speaker #2
True. And just the role reversal. You know, it goes into all the stereotypes of, oh, you're old. And now how vibrant and functional are you? And, you know, doing that and being at the age I am, you know. There are a lot of things, but there are lots of seriously blessings in the whole thing.
Speaker #0
Tori, are you ready to read us your piece?
Speaker #2
Yeah. As a novice in the early stages of caregiving for my husband, with whom I'll celebrate our 50th wedding anniversary on October the 1st. Oh, yeah. I suspect caregivers everywhere along the spectrum. can be partially or almost totally unseen or perhaps seen but hesitantly acknowledged by others who as observers are novices being in the milieu of sorting out and countering early stage Alzheimer's or dementia. So first I guess, well we've talked about it, by 2007 Jim suffered a major stroke we had at the time a yoga studio Jim was doing part-time, I was doing it full-time, and he did a headstand in class and suddenly things were different. This was followed by a brief relearning time on how to use eating utensils, ability to write, then speech therapy while on short-term disability, followed by long-term disability until Medicare kicked in. With a chance to relocate to another state to be with family, I took that opportunity. to do so before whatever would lie ahead manifested in a large way. In previous moves, Jim was able to handle significant parts of the move, but this time it was squarely on me to sort out, try to find passwords, and any notes about resources he had previously set up, looking at billings for something and going, what? As I reflect on it, the title Flying Blind feels like I'm in the cockpit of a prop. plane maneuvering the control panel with unfamiliar knobs, switches, flashing lights, Jim strapped in behind me. No airport traffic control tower as I've tried with mixed results to fly this experience filled with many unknowns and variations and changes in the flight plan. What do I see? Jim often has trouble speaking more than a few sentences or searches for the right word. He sometimes forgets when he hears noises upstairs, which is where our daughter and family live, who may be making the noise. Thankfully, so far, he consistently knows who I am and Lily, our dog, and some other life. Basics. Having recently moved to another state, our daughter Amy is helping to navigate the medical arena as we set up appointments and sort possible resources with the goal of having a proper diagnosis in order to access Medicare approved services. Amy encourages me as the primary caregiver to remain engaged socially as part of respite and a wider life. All this makes for a tall order. and complex layers to daily life. Flying blind for me means being in another state without the friends I had for the last 10 years and doing the cultivating of new friends. It means navigating medical service systems, each one requiring a laundry list of new passwords to remember, plus sleuthing the mysteries of the ins and outs of things handled or signed up for by Jim with few. or no notes or folders and working on whether or not I need a more comprehensive POA, power of attorney, plus not finding all his most current passwords and having a really good, almost normal or ordinary day with Jim than seeing some confusion or sadness in Jim as he brings him what he is losing. What a conundrum that simultaneously the good news is also the bad news. I know this is going straight to the point, that Jim could live a long while. Like so many Americans, the astronomical costs of a memory care facility or 24-hour nursing care would be impossible for us to financially sustain. So I cannot look to those resources as a backup. It makes me sad, it makes me scared, and it makes me angry that this is where we are. in American health care. Honestly, and this is being really raw, I can sometimes do the self-involved wondering at my ripe old age of 80, will I live long enough to see this in my rear view mirror, heartbroken, but exhaling with no caregiver fires to put out or watching my partner fade away. Then again, I'm so grateful. that as much as they are available, Amy and my son-in-law are and will be there for us.
Speaker #0
Corey, there's so much I want to unpack from what you just said. Ladies, they were both so powerful. And perhaps we use the word powerful too much. They were so relatable. Yeah. So relatable, I think. you mentioned the healthcare system. You mentioned the fact you might outlive your partner. These are all realities that caregivers face every day. And we don't have the support system. We don't have the healthcare system.
Speaker #1
Absolutely not.
Speaker #0
And that is scary. And it is flying blind. And as you have to agree, originally wanted to call this piece, what the fuck?
Speaker #1
It describes where we're at. Just like, yeah. Oh my God. Where are we? What's next? What, how do we, what?
Speaker #0
Aside from the fact of fact of how much you have had to navigate through at 80, another move, which I have moved 11 times in my life and each move, I feel like I lose another year of my life.
Speaker #2
Yeah. It's a lot.
Speaker #0
It's a lot, especially when you've been there a long time, it becomes even harder. harder because there's more to go through and you you brought up something that it's interesting I remember with my mom that the passwords that this to that when do you know to start asking yes or bank codes for signature for passwords for things without them feeling like
Speaker #2
you're taking over right and actually at one point being Miss Planner uh several years ago I had us write down our passwords and whatever but you know things change so some of them were no longer even when you could still respond oh no I changed that and so our our world is so cerebral that it's hard when you don't have that because you can't just get on a phone you know I get a text for a medical appointment they want me to go through all this I thought to have. password to get in, but that's not the same password as our bank. And then, okay, just another one for a Zoom I'm going to do. So that becomes a real challenge as well. And again, wanting to be honest about this because I'm going, yeah, what the fuck? I see all these movies again or pictures of memory care facilities where the husband and the wife are there and they're smiling and looking like it's just they're ready to go on a cruise. And, you know, I wonder if that must affect some others who are going into this like, wait a minute. What the best advice? Am I supposed to be Mother Teresa through this or Father Teresa? And it's not truthful. So I think that puts on layers of unintentional shame. And what is wrong with me that I'm experiencing these real feelings or making some dark humor that Amy and I can have about the whole process? They cut to get through it. Just to get through it.
Speaker #0
But you both did mention moments of respite.
Speaker #2
Yes.
Speaker #0
Do you find them? And if so, what are they? How do you find them?
Speaker #2
I think we're working on that.
Speaker #1
Yeah. It's a work in progress. We need to have somebody at the house to be with Jimmy. So it has to be planned. But it's more. Maybe going to get our nails done or what else? I mean, just simple things like going to the grocery store together. That is our moment out of the house together where we chat in the car. I mean, it's just very simple things in this moment.
Speaker #2
Yeah. I mean, they don't have to be large.
Speaker #1
Yeah. No, it's really little tiny. Like, hey, let's run to Whole Foods. My husband's here. He can be with him. And then we chatted up in the car. When I go to the stables with Leah on Tuesday, I'm trying to make an effort to remember to take my stepfather with me. So my mom can actually have two hours in the apartment alone to do her thing without somebody standing over her. So that's a routine we're trying to get in place so that she can just be in her own home without.
Speaker #0
responsibility so that's the rest of it we're trying to go and in the calendar regularly you your situation is such a beautiful example of the non-traditional caregiving situation because there's so many layers of caregiving going on and before you're taking care of your husband but you're back living with your daughter so you're taking care of her and your grandchildren and your great grandchild. And Amy, you're taking care of everyone as well. There's just layers and layers and layers of caregiving.
Speaker #1
Yeah, for sure.
Speaker #0
So my question to the two of you is in this new situation that you have in this new dynamic of living together again, what have you learned from each other?
Speaker #1
Good question. I think we're definitely learning each other's boundaries. And when something is a bit has gone too far or the space we each need. My mom likes to come up and be very chatty as soon as I get home from work. And we've had to, I need, I need a little decompression time. Just so learning each other's space boundaries. Remembering that my mom is not somebody who asked for help. So maybe I just need to cure into that. Let me know where she needs me to step in.
Speaker #2
I mean, for me, it's the awareness and remembering and reinforcing the basic compassion and goodness that Amy has that is, again, such a gift. Because even with friends, I could not be sure how much somebody really wanted to know.
Speaker #1
You know,
Speaker #2
there's that aspect, and I want to honor it. I don't want to just like flood the whole room or the situation or lunch with, oh, you know, somebody says, how you doing? Because they know that I know. But I'm not always sure. And I try to look for signs as I make some statements about what's happening. It seems like they want to go further.
Speaker #1
And some people are just asking to be polite. Yeah, I know.
Speaker #2
it's like the elephant in the room and they know that they need to do it.
Speaker #0
You touched on something that is very interesting because I remember it as a caregiver. Not knowing how much to tell your friends, even though they keep asking, even though they, how are you? How's your mom? And in your head, you're like, well, how much do you really want to know?
Speaker #2
Yeah.
Speaker #0
And some of it is, and I'm not going to lie, some friends were just to be polite.
Speaker #1
Oh, yeah.
Speaker #0
And what's interesting is I was speaking to other caregivers in my Alzheimer's group. a similar story came up and she actually missed the friendships that she used to have at work, who had no idea what she was going through, but because they knew a different version of her.
Speaker #2
Yes.
Speaker #0
Because they weren't always asking, how's it going? What's going on with Jim? They were more asking, how's yoga going? How's Buddhism going? Are you, are you painting? Are you still doing this more of you as a person, not as a caregiver? Ladies, my heart goes out to both of you. It is so wonderful to see what a beautiful relationship the two of you had. You have made an outstanding daughter who I would not be able to live without as my ride or die. I can't tell you enough how grateful I am for you sharing this story, for letting us into your space, for your vulnerability, for your honesty, for your rawness. And to all the caregivers out there,
Speaker #2
we see you and we hear you. See you next month.

Description

Hosted on Ausha. See ausha.co/privacy-policy for more information.

Transcription

Speaker #0
Hi, listeners, and welcome to another episode of Unseen Heroes, a podcast by a caregiver for caregivers. My name is Aliette, and I was once my mother's caregiver. Welcome to Unseen Heroes podcast. Today's episode is very dear to me. And I have been looking forward to this moment since this past summer. Amy, say hi, Amy.
Speaker #1
Hi, everyone.
Speaker #0
Is one of my ride or die friends from forever. You know, the kind of friend that shows up when you call with a shovel. No questions asked, except for where do I start digging? And Tori is the superwoman who created Amy. But I've never had the privilege to meet until now. Welcome, Tori.
Speaker #2
Thank you. Good to see you.
Speaker #0
Good to see you as well. So you're here today clearly because you're going through a caregiving journey.
Speaker #2
Yes.
Speaker #0
Would you like to explain to us what's going on?
Speaker #2
Well,
Speaker #1
so my stepfather, just to give a little background, had a stroke about 20 years ago.
Speaker #2
I wrote about that too.
Speaker #1
Yeah. And, um... That did cause some mental, how would you say that, mom? Some loss of hesitations. Right. And so there's been a slow progress of him losing some capabilities from that. And then, this is going to have to be edited. I was living abroad for about eight years while my parents were living in Santa Fe, New Mexico. Moved back to the U.S. and my mom was needing some assistance in her caregiving for my stepfather. So we moved them up to the northeast and they are now living in an apartment attached to us. And just to be a support as she tries to sort this out, take care of him.
Speaker #0
Now, I remember this entire transition because, Amy, we sort of lived it together as friends.
Speaker #1
Yeah.
Speaker #0
I'll be back in a minute. Amy and I left Switzerland at the same time. We moved to the East Coast together. She was happy to be close to family. And then I remember the priority when you were looking for a home was to be able to move your mom up with you.
Speaker #1
Yes. Yeah, it was. It was.
Speaker #0
Which is admirable. Not many people put that as a priority.
Speaker #1
Thank you. I know you did the same.
Speaker #0
So did, but it's just for caregivers to know that every. Every thought, every priority is special because not everyone does them.
Speaker #1
Exactly. Yeah.
Speaker #0
So, and then you did find a beautiful home that you loved.
Speaker #2
Yeah.
Speaker #0
And now mom has moved up with you. How is that going?
Speaker #2
I think it's going well. It was certainly a big shift, Santa Fe to Maryland. It was one of those things that. I knew I had to do. And as I recall, my previous therapist that I had said, you know, you have this knack for putting your head down and moving into the wind and doing what you had to do. And I just, I knew that at some point, because again, it's still flying blind. I'm sort of guessing at some of this. And... But I knew that if we didn't move soon, I might lose that window of opportunity to make the transition. And being familiar with the East Coast, having grown up here, and the additions of being able to be with a near family. I have other family here on the East Coast. And to watch and be with our granddaughter, our youngest granddaughter, as she prepares to... go on to college in a year. So it seemed like there were lots of layers, although, you know, there's that part being under the covers and waking up and saying, what in the name of God am I doing? I barely have energy for what I can see down the road, but it's what we had to do. And so glad that we did. And Tori, what does your husband suffer from? We don't as yet have a diagnosis.
Speaker #0
But how long has he been sick?
Speaker #2
Well, it's hard to say because, and I wrote about this in my little blip, because of his stroke,
Speaker #1
where he already lost some mental function, some memory, short-term memory from the stroke. It was, I hate to use what I wrote about, but it was really hard to tell what was just residual from the stroke and progressing as he aged. And where we needed to kind of intervene, like, oh, wait, this is no longer stroke side effects. We need to jump in.
Speaker #0
How long have you been his cerebral caregiver?
Speaker #2
I would say there have been tiny bits of it since his stroke. Which was? 2007. But then within the last couple of years, it's gotten to be more and then it seemed to pick up some momentum. And, you know, perhaps it was that I was so close to it that some of it I just, you know, that's Jim.
Speaker #1
I'd say for a good two years, you've had to do a lot more. And then within the last six to 12 months, you've had to take over the finances. Jimmy can't. drive. So mom is in charge of all of that.
Speaker #0
And Amy, I remember you telling me he has sundown syndrome as well. No?
Speaker #1
Yeah, yeah, exactly. I think so I was told by a doctor, a friend who's a physician that to expect some changes with the mood because they people with any type of dementia will get disoriented from a large, you know, a big move. And um So I've seen that and I definitely see the sun downing when he gets quite confused when things get dark.
Speaker #0
So let me bring this back to you two, because you're bearing the brunt of it. You, Tori, have left your home of Santa Fe, your friends, everything that you know.
Speaker #2
Yes.
Speaker #0
Everyone around you to move with your daughter because you needed the help. And you, Amy, are. supporting your mom, your stepdad, working part-time, supporting your daughter who's soon to go to university, and also supporting your husband who I know is not permanently there. He travels in and out, back and forth.
Speaker #2
Yeah.
Speaker #0
And you're also a grandmother of recent. So you also have a billion plates to take care of.
Speaker #2
Absolutely.
Speaker #0
And here we are in the shit sandwich of caregiving.
Speaker #2
Oh,
Speaker #1
yes. It is overwhelming. It's a lot.
Speaker #0
So my point with that is, I love that you came up with the prompt and I did not. Because sometimes I tend to come up with the prompt, but you two fabulous ladies came up with your own prompt of flying blind.
Speaker #1
Yes.
Speaker #0
Who wants to go first?
Speaker #1
I'll go first. Mine's very short, so I will read mine. Flying blind. It's been difficult to jump in and know where to begin supporting my mom as she cares for my stepfather. I've been catching up on where he is physically and mentally since they moved here and what next steps should be put in place. I think out of fear of the reality and gravity of the situation, my mom hasn't pursued a diagnosis or evaluation. It's also complicated by the stroke he suffered 20 years ago and figuring out what is just residual from that. So it's been hard to assess where we are now and how to move forward. I have realized over the last few months that it's important to ask her occasionally what she needs instead of making assumptions. And being patient when she isn't ready to tackle an issue. The move up to us was huge for them. And they need space to adjust and settle in. As well as all of us. Finding our comfort zone as we live together once again. I do feel sadness or anger at the situation that keeps me from having my mother more to myself.
Speaker #2
And I want to go places and share experiences with her. Wait, can we just, I don't want to bawl.
Speaker #0
No, you bawl because caregivers bawl. I used to bawl in the corner almost every day.
Speaker #1
and share experiences with her that she just can't participate in as a caregiver. I also try hard not to snap at my stepdad for consuming so much of her time. I remind myself frequently that he isn't doing this or that on purpose when he forgets. And treat him as an adult, not a child, despite it feeling like the responsibility of a young child at times. It's hard to face the reality of your parents aging and watch dementia take hold of a parent. I also remind myself that... It's important to allow my mom and all of us to feel grief, even though it's not a death, it's still a loss.
Speaker #0
The conflicts that you described, push and pull, the struggle of your mom being healthy, but having these responsibilities of not getting angry with your stepfather, of all the nuances and the emotions and the push and the pull. And the grace that you have to give each other.
Speaker #2
Yeah,
Speaker #1
absolutely.
Speaker #0
Tori, how did it feel listening to that for the first time?
Speaker #2
It was very powerful. And so appreciate that. Because, you know, in everyday life, it isn't like some made-for-TV movie. So, I mean, they're probably things that I would have known or felt or assumed for Amy. But hearing her say that, it brings sadness, but it's also an affirmation of the caring and, you know, why she slept all the way out there and got on the plane with us and brought us back.
Speaker #0
Oh, Amy, I feel it. And Hori, I understand so deeply because when you're a mom and Amy, you're a mom as well, you're always a mom.
Speaker #2
Yeah.
Speaker #0
Regardless of what age.
Speaker #2
Exactly.
Speaker #0
To protect your children.
Speaker #2
Yes, exactly. Yeah.
Speaker #0
Even when your children are old enough to protect you.
Speaker #2
True. And just the role reversal. You know, it goes into all the stereotypes of, oh, you're old. And now how vibrant and functional are you? And, you know, doing that and being at the age I am, you know. There are a lot of things, but there are lots of seriously blessings in the whole thing.
Speaker #0
Tori, are you ready to read us your piece?
Speaker #2
Yeah. As a novice in the early stages of caregiving for my husband, with whom I'll celebrate our 50th wedding anniversary on October the 1st. Oh, yeah. I suspect caregivers everywhere along the spectrum. can be partially or almost totally unseen or perhaps seen but hesitantly acknowledged by others who as observers are novices being in the milieu of sorting out and countering early stage Alzheimer's or dementia. So first I guess, well we've talked about it, by 2007 Jim suffered a major stroke we had at the time a yoga studio Jim was doing part-time, I was doing it full-time, and he did a headstand in class and suddenly things were different. This was followed by a brief relearning time on how to use eating utensils, ability to write, then speech therapy while on short-term disability, followed by long-term disability until Medicare kicked in. With a chance to relocate to another state to be with family, I took that opportunity. to do so before whatever would lie ahead manifested in a large way. In previous moves, Jim was able to handle significant parts of the move, but this time it was squarely on me to sort out, try to find passwords, and any notes about resources he had previously set up, looking at billings for something and going, what? As I reflect on it, the title Flying Blind feels like I'm in the cockpit of a prop. plane maneuvering the control panel with unfamiliar knobs, switches, flashing lights, Jim strapped in behind me. No airport traffic control tower as I've tried with mixed results to fly this experience filled with many unknowns and variations and changes in the flight plan. What do I see? Jim often has trouble speaking more than a few sentences or searches for the right word. He sometimes forgets when he hears noises upstairs, which is where our daughter and family live, who may be making the noise. Thankfully, so far, he consistently knows who I am and Lily, our dog, and some other life. Basics. Having recently moved to another state, our daughter Amy is helping to navigate the medical arena as we set up appointments and sort possible resources with the goal of having a proper diagnosis in order to access Medicare approved services. Amy encourages me as the primary caregiver to remain engaged socially as part of respite and a wider life. All this makes for a tall order. and complex layers to daily life. Flying blind for me means being in another state without the friends I had for the last 10 years and doing the cultivating of new friends. It means navigating medical service systems, each one requiring a laundry list of new passwords to remember, plus sleuthing the mysteries of the ins and outs of things handled or signed up for by Jim with few. or no notes or folders and working on whether or not I need a more comprehensive POA, power of attorney, plus not finding all his most current passwords and having a really good, almost normal or ordinary day with Jim than seeing some confusion or sadness in Jim as he brings him what he is losing. What a conundrum that simultaneously the good news is also the bad news. I know this is going straight to the point, that Jim could live a long while. Like so many Americans, the astronomical costs of a memory care facility or 24-hour nursing care would be impossible for us to financially sustain. So I cannot look to those resources as a backup. It makes me sad, it makes me scared, and it makes me angry that this is where we are. in American health care. Honestly, and this is being really raw, I can sometimes do the self-involved wondering at my ripe old age of 80, will I live long enough to see this in my rear view mirror, heartbroken, but exhaling with no caregiver fires to put out or watching my partner fade away. Then again, I'm so grateful. that as much as they are available, Amy and my son-in-law are and will be there for us.
Speaker #0
Corey, there's so much I want to unpack from what you just said. Ladies, they were both so powerful. And perhaps we use the word powerful too much. They were so relatable. Yeah. So relatable, I think. you mentioned the healthcare system. You mentioned the fact you might outlive your partner. These are all realities that caregivers face every day. And we don't have the support system. We don't have the healthcare system.
Speaker #1
Absolutely not.
Speaker #0
And that is scary. And it is flying blind. And as you have to agree, originally wanted to call this piece, what the fuck?
Speaker #1
It describes where we're at. Just like, yeah. Oh my God. Where are we? What's next? What, how do we, what?
Speaker #0
Aside from the fact of fact of how much you have had to navigate through at 80, another move, which I have moved 11 times in my life and each move, I feel like I lose another year of my life.
Speaker #2
Yeah. It's a lot.
Speaker #0
It's a lot, especially when you've been there a long time, it becomes even harder. harder because there's more to go through and you you brought up something that it's interesting I remember with my mom that the passwords that this to that when do you know to start asking yes or bank codes for signature for passwords for things without them feeling like
Speaker #2
you're taking over right and actually at one point being Miss Planner uh several years ago I had us write down our passwords and whatever but you know things change so some of them were no longer even when you could still respond oh no I changed that and so our our world is so cerebral that it's hard when you don't have that because you can't just get on a phone you know I get a text for a medical appointment they want me to go through all this I thought to have. password to get in, but that's not the same password as our bank. And then, okay, just another one for a Zoom I'm going to do. So that becomes a real challenge as well. And again, wanting to be honest about this because I'm going, yeah, what the fuck? I see all these movies again or pictures of memory care facilities where the husband and the wife are there and they're smiling and looking like it's just they're ready to go on a cruise. And, you know, I wonder if that must affect some others who are going into this like, wait a minute. What the best advice? Am I supposed to be Mother Teresa through this or Father Teresa? And it's not truthful. So I think that puts on layers of unintentional shame. And what is wrong with me that I'm experiencing these real feelings or making some dark humor that Amy and I can have about the whole process? They cut to get through it. Just to get through it.
Speaker #0
But you both did mention moments of respite.
Speaker #2
Yes.
Speaker #0
Do you find them? And if so, what are they? How do you find them?
Speaker #2
I think we're working on that.
Speaker #1
Yeah. It's a work in progress. We need to have somebody at the house to be with Jimmy. So it has to be planned. But it's more. Maybe going to get our nails done or what else? I mean, just simple things like going to the grocery store together. That is our moment out of the house together where we chat in the car. I mean, it's just very simple things in this moment.
Speaker #2
Yeah. I mean, they don't have to be large.
Speaker #1
Yeah. No, it's really little tiny. Like, hey, let's run to Whole Foods. My husband's here. He can be with him. And then we chatted up in the car. When I go to the stables with Leah on Tuesday, I'm trying to make an effort to remember to take my stepfather with me. So my mom can actually have two hours in the apartment alone to do her thing without somebody standing over her. So that's a routine we're trying to get in place so that she can just be in her own home without.
Speaker #0
responsibility so that's the rest of it we're trying to go and in the calendar regularly you your situation is such a beautiful example of the non-traditional caregiving situation because there's so many layers of caregiving going on and before you're taking care of your husband but you're back living with your daughter so you're taking care of her and your grandchildren and your great grandchild. And Amy, you're taking care of everyone as well. There's just layers and layers and layers of caregiving.
Speaker #1
Yeah, for sure.
Speaker #0
So my question to the two of you is in this new situation that you have in this new dynamic of living together again, what have you learned from each other?
Speaker #1
Good question. I think we're definitely learning each other's boundaries. And when something is a bit has gone too far or the space we each need. My mom likes to come up and be very chatty as soon as I get home from work. And we've had to, I need, I need a little decompression time. Just so learning each other's space boundaries. Remembering that my mom is not somebody who asked for help. So maybe I just need to cure into that. Let me know where she needs me to step in.
Speaker #2
I mean, for me, it's the awareness and remembering and reinforcing the basic compassion and goodness that Amy has that is, again, such a gift. Because even with friends, I could not be sure how much somebody really wanted to know.
Speaker #1
You know,
Speaker #2
there's that aspect, and I want to honor it. I don't want to just like flood the whole room or the situation or lunch with, oh, you know, somebody says, how you doing? Because they know that I know. But I'm not always sure. And I try to look for signs as I make some statements about what's happening. It seems like they want to go further.
Speaker #1
And some people are just asking to be polite. Yeah, I know.
Speaker #2
it's like the elephant in the room and they know that they need to do it.
Speaker #0
You touched on something that is very interesting because I remember it as a caregiver. Not knowing how much to tell your friends, even though they keep asking, even though they, how are you? How's your mom? And in your head, you're like, well, how much do you really want to know?
Speaker #2
Yeah.
Speaker #0
And some of it is, and I'm not going to lie, some friends were just to be polite.
Speaker #1
Oh, yeah.
Speaker #0
And what's interesting is I was speaking to other caregivers in my Alzheimer's group. a similar story came up and she actually missed the friendships that she used to have at work, who had no idea what she was going through, but because they knew a different version of her.
Speaker #2
Yes.
Speaker #0
Because they weren't always asking, how's it going? What's going on with Jim? They were more asking, how's yoga going? How's Buddhism going? Are you, are you painting? Are you still doing this more of you as a person, not as a caregiver? Ladies, my heart goes out to both of you. It is so wonderful to see what a beautiful relationship the two of you had. You have made an outstanding daughter who I would not be able to live without as my ride or die. I can't tell you enough how grateful I am for you sharing this story, for letting us into your space, for your vulnerability, for your honesty, for your rawness. And to all the caregivers out there,
Speaker #2
we see you and we hear you. See you next month.

Embed