The Age Guide: Perspectives on the Aging Journey

Caregiving with Compassion: An Invisible Act of Love

• Age Guide • Season 2 • Episode 2

Share episode

For the month of March, which is both Disability Month and Women’s History Month, we honor the many older adult women caring for a loved one with disabilities.  Today, there are nearly one million households in which someone aged 60 or older is caring for an adult with an intellectual or developmental disability and the vast majority of those caregivers, 75%, are women. They spend, on average, 40 hours week, the equivalent of a full-time job, in caregiving.   

In the next and last episode of our caregiving series, we interview Nancy Hamilton, just one of the many women caregivers. Hear Nancy’s story about caring for her adult son who has a developmental disability and the many challenges, emotions, and rewards of her journey. Nancy puts a face on caregiving and gives her unique perspective on the intersection of disability, caregiving, and aging.

Paws Giving Independence:
https://givingindependence.org/ 

Facebook: facebook.com/AgeGuide
Twitter: twitter.com/AgeGuide
Instagram: instagram.com/theageguidepodcast
Podcast: ageguide.org/the-age-guide-podcast
Website: ageguide.org

SPEAKER_00:

Hello, and welcome to The Age Guide, perspectives on the aging journey. We are here to be your personal age guide and enhance your quality of life on the road ahead. The month of February is both Disability Month and Women's History Month. In honor of this, we acknowledge the many older adult women caring for a loved one with disabilities. Today, there are nearly 1 million households in which someone aged 60 or older is caring for an adult with an intellectual or developmental disability. And the vast majority of those caregivers, 75%, are women. They spend on average 40 hours a week, the equivalent of a full-time job in caregiving. In the next episode of our caregiving series, we interview Nancy Hamilton, who is caring for her adult son who has a developmental disability. Hear about her journey as a caregiver through the many challenges, emotions, and the rewards that go with it. Nancy puts a face on caregiving and gives her unique perspective in the intersection of disability, caregiving, and aging. Let's listen in.

SPEAKER_05:

All righty, welcome, Nancy. Thank you so much for joining us today. I know you are a very busy caregiver with a lot on your plate, and it's especially appreciated this time of year with the holiday season and so much going on. Thank you for being here with us. We're excited to hear about your caregiving journey. I understand that you are a caregiver caring for an adult with some disabilities, and Can you tell us a little bit about your personal caregiving journey?

SPEAKER_03:

Sure. Well, it's actually been a long caregiving journey. My son is 35 years old. He was born with disabilities. And so it's, you know, everything's been a little bit more of A little different. I guess you could call it a challenge, but it's been different. Just things that you had to watch out for, even as a young child, that you didn't with other children. You don't have to watch out for. So it's been challenging. In the meantime, my job was also being a caregiver. I'm retired as a nurse.

SPEAKER_05:

Oh, okay.

UNKNOWN:

Yeah.

SPEAKER_03:

So I kind of have been a caregiver forever. But so it's the challenges, I just, there's so much with someone with any kind of special needs, whether it's, you know, someone with a younger person with disabilities, a child with disabilities, anybody with any kind of medical problems, you have extra planning you have to do. You have, and that's kind of been not a challenge. You get used to it. I mean, we try to look at things with humor, you know, Try to because it's like one time somebody asked me how I could joke about certain things like, what's my alternative to be sad and crying and angry all the time so you find try to find the humor and situations and. Yeah.

UNKNOWN:

Yeah.

SPEAKER_05:

Definitely. That's interesting, like the way you describe having been a caregiver forever. I mean, it was your job, it was your role, and then you were a mother. Mothers are caregivers and they're caregiving, but your situation was a little bit different because you had the added stressors of some disabilities right from the beginning, I guess. And we at Age Guide, we work mostly with older adults. A lot of older adults are caregiving. And as parents of children with disabilities, as the parents age, the individual with disabilities continues to need care, and they don't necessarily leave home, they may be staying at home for an extended time in their life, they may need extra help. And parents just continue to provide that, even as they're aging, and maybe needing some help at home. So it's kind of a unique niche for caregivers, those older adults, you know, anybody over 50, who's caring for a loved one with a disability has some unique challenges that maybe other caregivers come to this unexpectedly later in life. But you've been doing this for a really long time. And some of that probably gives you some great expertise, a good sense of humor, it sounds like you have your ways of dealing with it. But I know that being a caregiver for somebody with disabilities can also be kind of relentless. And it can take a toll and it can be kind of exhausting, not that you don't love the person to death and you would do anything for them, but it does, you know, impact you as a person. Have you experienced some of that yourself?

SPEAKER_03:

Definitely. So one of the things I, I don't know whether I had told you this before, my husband is also disabled and He had

SPEAKER_05:

stroke.

SPEAKER_03:

So it's kind of with being older, getting as we're getting older physically, it's getting harder for more difficult. I think for everybody, as far as patients trying to get things done, everybody needs something, you know, Yeah. So you're

SPEAKER_05:

caring for two people and you don't have the support that you used to have from your husband and caring for your son, I imagine.

SPEAKER_03:

Right. Right. So, I mean, there's a little, I can go for a short period of time, like to the grocery store by myself. That's really, you know, it was like when you're excited to go to the grocery store. When you know that you need some respite, you need to get out more. Yeah. So it's like, I know we've just trying to make sure that, you know, I sit down and eat after I make sure everyone's gotten their food, you know, like little things that you don't think of should be, should be an automatic. Oh yeah. You can sit. No, you can't, you can't just go to the store and not expect a phone call or, you know, there's a lot of, you have to consciously make, make an effort to be aware of, okay, no, I need to sleep and make everyone aware. I need to, do this first you know and like you said it's not that you you know that a lot of these things are not within something they can help but also there are certain times that you just need to let them know okay i need i need to prioritize you know like okay bill's got to be paid so making legos is not the priority you know or making dinner we have to make sure we eat dinner because uh And I think that happens no matter whether it's a disabled adult child, you know, adult or a spouse or a parent. I think caregiving becomes so, I sort of want to say, it becomes your whole life where you have to make, remind yourself, okay, other things need to be, I need to be done. And especially for parents or people who have other children or other family members, they need attention too.

SPEAKER_05:

So when Andy was younger, you had other kids and you were trying to balance all that. And now you've got Andy and your husband who both need some care. So can you tell us a little bit about Andy?

SPEAKER_03:

So Andy is like I say, he's 35 years old. He was a little bit early. He had a birth injury. Okay. I don't know whether it's like he's adopted. I don't know whether that's something. Okay. Because at the time I worked in NICU, but we... I couldn't have, I mean, we had gone through a lot of treatments and stuff and didn't think I was ever going to have kids. And so it was like meant to be, I was a NICU nurse and he was their first special needs baby to place.

SPEAKER_05:

So you could, and because you were a nurse, you kind of knew what you were getting into, but it's always a different journey than what you expect when you have a child with some disabilities. There's no way to predict what they're going to be able to do. And there's no manual that comes with them, right? Yeah.

SPEAKER_03:

Right. And it's just like as appearances. I mean, because Andy doesn't look like he has anything wrong with him.

SPEAKER_05:

Okay. He doesn't wear his diagnosis on his face.

SPEAKER_03:

Yeah. He also has epilepsy. He's had seizures. We're finally under control. It only took 33 and a half years. But because that was something that was always um he had to be aware of safety for i mean he has a vegas nerve simulator he's on a lot of medication but he would still seize and be like so even if he did activities usually i had to kind of be around or he had to make sure there was someone who was trained right with what to do um so it was i mean things like special olympics he qualified for state for winter games a couple of times. And the one time we got there, he's all excited because they have a parade down the main street of Galena. And he was so excited. Well, then he had a seizure

SPEAKER_04:

like,

SPEAKER_03:

okay, well, let's wait till you see how you feel. And he had another one. It's like, okay, maybe I'll walk with you down the main street. Okay. Then he had another one. It's like, and I think he ended up having like five. It's like, we ended up not going to anything. We ended up going home the next day. It just was, it was a really long night. And I'm like, I don't know, there was also a snowstorm. So I didn't feel like driving home from Galena. And I don't know, I guess there is hospitals west of Galena that are closer than Rockford, but I'm not familiar with the area. And it's like, I don't know what else to do. So

SPEAKER_05:

when you have somebody who's medically fragile like that, it can be scary to go on a trip basically. And this was something that was really important to him that he was really excited about doing that special Olympics is supposed to be for him. Right. And then experience some normalcy in his life, right. And compete in the games. And then he ended up not being able to, and you were stressed out and that's,

SPEAKER_03:

it was just, it was a long night to say, I mean, I talked to his, I could talk to his doctor, um, like, okay, how much, you know, safely, how much of certain meds can I give? It's just that it, and maybe we should, you know, in retrospect, like maybe we should have, I think we were all so tired by the next

SPEAKER_05:

day. Yeah. That's a lot to go through and then try to do something major the next day. That's too much. Yeah.

SPEAKER_03:

You do a lot of second guessing, I guess, or like in retrospect, maybe I would have done something different, but. you do the best

SPEAKER_05:

you can exactly you can't do that to yourself because there's so many things like that that will come up in life you know with somebody who's got some special things going on that's always challenging as a mother to not feel that guilt but you have to release yourself from that guilt sometimes it's not easy but no that was a good example I appreciate that just to sort of like put it in perspective of what life is like when you try to do something special and it doesn't always work out the way that you would like it too and um that was supposed to be like a really fun thing for your family and and it didn't quite work out that way

SPEAKER_03:

and there's like tons of stories we could go about you know well we were gonna no we're not gonna do that we're gonna i know we're not gonna do that but that's just part of having with someone with certain things like epilepsy or other illnesses and

SPEAKER_00:

On our last episode, we'll interview John and Sandy Miller, co-founders of the Sounds Good Choir, to learn how this unique choir offers respite to caregivers of all ages while helping people with dementia and other disabilities connect to music and artistic expression.

SPEAKER_02:

After you've been there for 30 or 45 minutes, the people with memory loss, their brains start to wake up and the singing switches them on. And then he said, for the rest of the rehearsal, you can't tell who has dementia and who doesn't. And you there's no way to know this other than you got to come see it. So I was like, OK, sign us up. Let's go. And we cried all day. It was one of the most beautiful things we'd ever seen.

SPEAKER_01:

And in our life now, we see that all the time. We see exactly that, you know, that our singers, you know, spend the rehearsal with us. And by the end of the rehearsal, they are cognitively and behaviorally in a very different place than they were when they walked in.

SPEAKER_00:

And of course, you'll get to hear clips from the Sounds One of the things with seizures versus some of

SPEAKER_03:

the other chronic conditions that kids have is you have no control. You have no inkling that things are going to happen. So it's not like watching what you're eating or avoiding triggers for whatever.

SPEAKER_05:

Something simple like that where you could plan and control the environment. You can't control that seizure.

SPEAKER_03:

Walking into Disney World is like... You know, we got really good at kind of being nonchalant. If he had short seizures, you know, just go in a wheelchair and you'll wake up in a little while, you'll feel better. But if people see you, they call 911 or whatever. It's like walking into Disney World. No, he'll be fine. We're just going to sit here for a few minutes. And he had another one. Well, now we have to go. called paramedics like really we're sitting in front of disney world entrance

SPEAKER_05:

oh and then you get stuck there waiting for medical help that you don't

SPEAKER_03:

actually need yeah well and it's like do you want to go to the hospital no no because they're what do you know i try to avoid because

SPEAKER_05:

i'm sure you've spent hours and hours and

SPEAKER_03:

they they tend to over sedate anyway when and i get it that they don't they're not used to seeing someone like if you're used to I'm used to his seizures.

SPEAKER_05:

Yeah.

SPEAKER_03:

So I know, I know when,

SPEAKER_05:

when he needs some more help and when he doesn't, but they're going to just have to use their medical protocol. And if you call them, they're going to have to get seriously involved. That's tricky. Yeah. And so does the therapy dog help, um, to let you know when a seizure is coming or.

SPEAKER_03:

Yes. He has actually, um, done with any activities. And with one of the activities, he was doing gymnastics. Oh, good for him. We tried it. We should have done it when he was younger. But Hyatt wouldn't settle. His dog wouldn't settle, wouldn't settle, wouldn't settle. And he normally would just lay there because he had to stay by me because he couldn't be on the mat. And he wouldn't settle. And some of the other parents were like, that's weird. He's never liked that. And he had a whopping seizure. And it was like... Okay. That's why he was just, he was just really hyper because he anticipated it. I mean, he, he's very good at like coming to get somebody if he, if Andy seizes, but this was a very definite, he anticipated, he knew something was wrong before anybody else did.

SPEAKER_05:

And

SPEAKER_03:

Andy has no warning. So we could be in the

SPEAKER_05:

okay

SPEAKER_03:

goes out you know

SPEAKER_05:

okay so now the dog can kind of give you a heads up you can get andy to sit down or take a break if he's doing an activity oh that's good

SPEAKER_03:

but so hyatt was trained in prison and um uh and it's it's it's to me it's a great program because they help so many people they help so many beings i mean they take a lot of the dogs are rescue dogs um they're helping the prisoners they're helping the college students and other people with i mean because it's it's just kind of a cool thing you know

SPEAKER_05:

yeah it's really a lot of pieces of the community coming together to make this work that's

SPEAKER_03:

very cool what a neat organization so it's um you know purely like donations like so we go they have a big fundraiser every fall they have a walk every year

SPEAKER_05:

That's good. We'll have to put a link to that organization in our show notes so that people can find them if they want to donate.

SPEAKER_03:

It's just really, it's really cool. I mean, there's so many people who have had, have the ability now to go places that they couldn't. Be more

SPEAKER_05:

independent because of the dog. I

SPEAKER_03:

mean, the dogs can, one of the families we got to know, I mean, um, the person is in a wheelchair and the dog is able to like put his foot back on the, on the footrest, um, can open doors, open refrigerators, go get water, go get meds for you. I mean, that's to me is amazing. It gives that ability to be a little more independent and, um, yeah, I guess, I don't know. It's just, it's such a, great thing that's really

SPEAKER_05:

neat i think we need more of those therapy dogs i'm thinking like a lot of older adults who are aging and starting to have trouble being independent in their home could really use a pet that could help them with things like that that's interesting

SPEAKER_03:

it's it's really and i know there's other organizations i just have a really soft spot for them because they have been i mean they're with the challenges uh they've helped us with things like where um where some people who are cognitively or otherwise don't have problems, but have physical problems that the dogs can help. But we've been able to find workarounds for some of the challenges that we have.

SPEAKER_05:

Oh, that's

SPEAKER_03:

neat.

SPEAKER_05:

Yeah, it's very cool. And that gives you a little bit of respite, too, knowing that the dog is keeping an eye on things and can help Andy with some things that otherwise you would have had to help him with. Right. So that's really nice.

SPEAKER_00:

Age Guide is hosting its annual Advocacy Breakfast Collaborative. We invited elected officials, aging network providers, local partners, and concerned citizens to a community discussion about current issues facing older adults, caregivers, and families in Illinois. Join us virtually Monday, March 13th at 10am and in person Friday, March 17th at 9am at Senior Services Associates in Aurora. Please go Have you

SPEAKER_05:

received any other kinds of community-based services over the years or, you know, to help you as a caregiver get some respite care or some support at home?

SPEAKER_03:

Anyone who, you know, people who are qualified or who are willing to help. I've been trying, so mainly our main thing has been stuff through special rec. Now that seizures are a little more controlled, I've been able to let them be at a thing for two hours without me there. Other parents are probably one of the best supports you have and sources of information. I mean, encouragement, I guess, even too, not to give up when things are, you know, Because one of the things that as with any person, with any, whether it's a senior or someone with disabilities, the denial of services over and over again, and it's kind of just persevere, persevere, persevere, maybe it'll work, you know, but that's.

SPEAKER_05:

Try to find the right thing that you qualify for with your unique situation can be challenging.

SPEAKER_03:

I worry also about like, it's

SPEAKER_05:

long-term. Yeah, I think that's a major concern of a lot of parents of adults with disabilities is what's the long-term plan and who's going to be there for the long-term. That can be incredibly stressful to think about and to find resources to help with that kind of planning can be challenging too. So we definitely will want to share some resources with you, but there's no simple solution or easy answer. I know it's challenging.

SPEAKER_03:

Yeah, I just... I guess now I just try to, we try to end each day with thinking of something we're grateful for, try to come up with. And some days it's like, you gotta come up with three things we're grateful for. But I think it kind of keeps everyone's perspective. You know, you kind of, Yes, there are things that are not going good or there's things that are, you know, you would rather have X, Y, or Z, but you have a roof over your head. You're warm in the winter, you're cool in the summer. You have a lot of fun things to do. You have people who love you. So try to be, try to look at the positives. So we always make a joke about, we try to make lemonade, but like one time we were at a hotel and Andy had a seizure in the pool and they didn't have a wheelchair. But you know what works really good? Luggage carts.

SPEAKER_05:

My goodness.

SPEAKER_03:

So we always bring up luggage carts. To make

SPEAKER_05:

do. Luggage carts symbolize

SPEAKER_03:

making do with what you can find. So we bring up things like that to try to make... it's not like you're making fun of it, but it's like, you try, got to look at the light side of things.

SPEAKER_05:

Good for you. That's a really good attitude that you have, Nancy. I appreciate that. It's, I mean, everybody needs to have that kind of attitude in life and you've definitely learned that through a lot of life experience. Sounds like, wow. Well, I really appreciate this interview is really insightful and I appreciate you sharing your story with us and we'll send some resources and we'll put some resources in the show notes and we'll We'll share it with you so that you know when it's coming out. But thank you so much for joining us and sharing your story and Andy's story. Thank you. Take care. Bye-bye.

SPEAKER_00:

Thank you for listening to The Age Guide, Perspectives on the Aging Journey. We hope you learned something new on this podcast because we all have a stake in promoting a high quality of life for people on their aging journey. Age Guide coordinates and administers many services for older adults in Northeastern Illinois. We serve DuPage, Grundy, Kane, Kankakee, Kendall, Lake, McHenry, and Will Counties. Our specially trained professionals are available to answer questions and connect you with local service providers and resources. In addition to the Sounds Good Choir, Age Guide, in partnership with other agencies, offers many other caregiver support services that include include access to counseling, legal services, training, and support groups, as well as financial assistance for supportive services such as respite care. All of these services are tailored to each unique caregiver based on an individual assessment called TCARE. If you are interested in these services or want to learn more, go to our website at ageguide.org. call our offices at 630-293-5990. Please follow our podcasts so when we post our monthly podcast, you are notified on your streaming account. Thank you, and we will see you next time on The Age Guide, Perspectives on the Aging Journey.