Nearly half of all middle-aged Americans are responsible for raising children and caring for aging or ailing parents — millions of whom live with Alzheimer's disease or dementia. Jody Gastfriend knows the stress of being "sandwiched" like this first-hand. A licensed clinical social worker with over 30 years of experience in senior care, she helped manage the care of her own father living with dementia for more than a decade. Her resulting book, My Parent's Keeper: The Guilt, Grief, Guesswork, and Unexpected Gifts of Caregiving, is considered an essential guide to caring for aging and ailing family members. Jody joins the podcast to talk about the emotional, physical, and financial struggles adult children experience when they care for a parent living with Alzheimer's disease or dementia...and how to overcome them.
Listen to this episode to learn:
Feeling Sandwiched? Working, Raising Kids, and Caring for an Aging Parent
Intro: Welcome to the Equal Parts podcast brought to you by Care@Work.
Emily Paisner: Being a working parent is hard but caring for kids and an aging parent or loved one that's really hard. Today, we're shifting gears a little bit and we're talking about another major care issue that many are faced with, senior care. My guest today is Jody Gastfriend. She's a licensed clinical social worker with more than 30 years of experience in health care and business settings.
She's also the vice president of Senior Care at Care.com. Jody knows the challenges of family caregiving firsthand having helped manage the care of her own father with dementia for more than a decade. Her book My Parent's Keeper: The Guilt, Grief, Guesswork, and Unexpected Gifts of Caregiving was published by Yale University Press and is an essential guide to caring for aging and ailing family members.
During our conversation, Jody talked about the many challenges adult children and families face when caring for a parent or relative living with dementia. She offered great guidance and practical advice for how to deal with it. Have a listen.
Jody, thank you so much for joining us today.
Jody Gastfriend: It's a pleasure to be here.
Emily Paisner: Jody, besides being an expert in senior care, and I know you have decades of experience, you also have personal firsthand experience with this subject. I know you helped manage the care of your own father with dementia for over 12 years. What was that experience like for you and your family and how did you balance your expertise with now dealing with it on a personal level?
Jody Gastfriend: When my father developed dementia he was quite young. He was only 72 years old. Like many families, we didn't recognize the early signs. We just thought he was being the absent-minded professor that he often was. You have to keep in mind that this was in the late 1990s. I didn't have the support that many people have today. When we learned my dad had dementia, it was absolutely devastating.
The good news is that my mother was a terrific support to him. I had siblings who helped out. We worked very well together. My dad was willing to accept help. We had money to pay for care and I had a supportive workplace. I really was very fortunate. I'm very aware that many people in a similar situation don't have all those advantages and it can be tremendously stressful.
Emily Paisner: As we're getting close to the holidays a lot of people tend to notice around that time when their families are getting together that maybe mom or dad just isn't quite the same as they used to be. What are some of the early warning signs?
Jody Gastfriend: One of the really devastating aspects of this disease is that the progression begins 20 years often before symptoms even appear. By the time you start seeing really marked symptoms of Alzheimer's or dementia the disease has been going on for quite a while. With my dad, it was things like he got lost taking a drive from the post office to home. Something he had done hundreds and hundreds of times.
Most of the time it's some type of memory loss. What I often tell families is what's different? Did your mom used to make a recipe that she's done for 30 years and all of a sudden forgets how to do it or does your father pay bills and now starts making mistakes with a checking account which is what happened with my father? Oftentimes, people start to repeat themselves, they forget appointments.
Sometimes they become disengaged, so they don't have the ability to communicate in the way that they used to or sometimes there are really different mood changes. Someone who is either easy-going becomes combative and angry or sometimes people just become complacent. It's looking for things that really seem different from the person that you used to know. If you go to the Alzheimer's Association website, they actually list the different signs and symptoms which is helpful for people to really understand.
Emily Paisner: I think a lot of our listeners are part of the sandwich generation where they're caring for young children as well as an aging parent and working a full-time job. It's great that you feel like now there are more support systems in place than there used to be so it sounds like we're definitely making progress, but how do people manage this unbearable stress and burden that they face every day?
Jody Gastfriend: I've often heard people say it's not only the sandwich generation it's the panini generation. People literally feel squished between two generations. There's another term that didn't exist before. That's the club sandwich generation. We now have multiple generations of people either living together or caring for children, grandchildren, and perhaps aging parents. This is really unprecedented.
When I was a sandwich generation caregiver, I had three kids at home, I was going back and forth across the state to care for my dad, and I had a full-time job. When I first heard that term, I thought, "Oh, wow, that's me." I think people need to be talking about this. It's very easy not to reach out for help when you're in that situation.
Emily Paisner: Because who has time, right?
Jody Gastfriend: Who has time?
Emily Paisner: You're caring for other people. Who has time to care for yourself?
Jody Gastfriend: Right, and I write about this in my book that my goal was just to get through the day. That probably sounds familiar to a lot of listeners out there. It's very hard to stop and think about your own needs and to get the information that you need. Then there's all sorts of things that come up; a crisis with your child, with your parent, at work, there's a flood in your basement, life just gets in the way. I think there are a number of things that people really need to do.
One is to get information about what help is out there. We'll talk more about that. Figure out how do you actually pay for that help? If you're in the workplace, find out, are there options to support caregiving employees? There weren't a whole lot when I was going through it but now really, there are. Also, are there other types of support, like caregiver support groups? There are some tremendous online resources. I mentioned the Alzheimer's Association. There are other caregiving resources that can really give you information so you're not trying to figure this out without any kind of a compass.
Emily Paisner: That's a great way to put it because I'm sure there is no compass for any situation. Every one looks a little bit differently.
Jody Gastfriend: Exactly.
Emily Paisner: You talked about that there is help out there. What are the options for people?
Jody Gastfriend: With my father, we started out caring for him at home. First, we had volunteers come in and check in on him. Then we had paid caregivers. For the last six years of his life, he was in nursing homes because my mother really was not able to care for him on her own. One of the first things I tell people is, never say never. You've really got to be open to the different help that's out there. Many people feel quite guilty about having other people take care of their loved ones. That's why guilt is in the title of my book. Guilt is really the constant companion of caregivers.
Maybe the first step is recognizing that and recognizing that maybe the needs of your loved one are beyond what you or even your family members can do. That opens up the door to getting help. What that help looks like might be different for each person and might be different, depending on the stage of caregiving you're in. There's lots of home care assistance that's available. There are caregivers who are specifically trained in dementia care. There are resources in training people on how to engage with people with dementia, which is really important. Then there are memory care units and assisted living communities and in nursing homes.
Emily Paisner: How do you find the right care plan for your family and for the person who's suffering?
Jody Gastfriend: I think it's important to get some expertise and assistance. The first place to go is really healthcare professionals. Have you had a thorough medical workup? There now memory disorder clinics. We actually took my dad to one many years ago. It was very painful when the doctor told us, my mom, me, and my dad that my father had dementia. He listened with pained acceptance. We were fortunate that he took that in. The other thing that the doctor did, which we were quite grateful for is he actually wrote a prescription for my father to stop driving. Driving is one of the really difficult issues that caregivers are confronted with, particularly around cognitive changes.
Emily Paisner: We're going to get to that in a little bit. You just said that your dad listened to the doctor with pained acceptance, and a lot of times people don't do that. They're very resistant to getting the help that they need. They may be offended, they may be angry, they may insist that they're okay. How can you help them to help themselves?
Jody Gastfriend: The first thing is that denial is really a normal part of this process. People do not want to accept the reality that there's something going on with their brain that is really changing their ability to function in this world. Both caregivers and the person going through it, so you can't really confront denial with a sledgehammer. You really have to approach the person with the disease with as much compassion, understanding, and support.
I will often say, you are a care partner. Not a care coarser, even though that might feel like the right thing in the moment because the person is resistant to care. Find common ground. Maybe they're upset about they're not able to remember certain things or they're not able to be engaged in the same kind of activities they are. You want to be able to say, "I'm concerned dad that you are no longer able to golf in the way used to", or, "You seem to be having trouble driving", or "Your sleeping seems disturbed", or "You seem upset. Are you worried about that too?"
I think that when you can have a conversation and introduce support as a way to really help someone with what they're concerned about, that feels like you're not taking control away.
Emily Paisner: You mentioned this earlier, and I said we'll get back to it in a little while, about driving. Driving is literally the key to independence. When you realize that your aging loved one is no longer capable of driving, but they think that they are, how do you handle this?
Jody Gastfriend: This really depends on how much at-risk the family member is. Sometimes it's really gradual, and people start to often curtail their own driving, they don't drive at night and they don't drive on the highway. These may be signs that they are losing confidence in their ability to drive in more challenging situations. You can really leverage that and say, "Is it time to think about other transportation options?" It's so important to understand driving, as you said, as key to independence.
For people who are in rural areas or who don't have easy access to transportation, one has to be really mindful of the risk of isolation, which has some really severe health and physical and emotional risks. You don't want someone to become isolated because they stopped driving. You have to replace it with something. Fortunately, there are more options now than there used to be.
My mom, I put her on a number of Ubers and Lyfts, and that has been a great way to get her back and forth, to visit family and to get to appointments. There's also a resource called GoGoGrandparent, it's like Uber and Lyft but you don't have to have the smartphone. I would certainly start with a conversation, and maybe some of the advantages of giving up a car. "You don't have the car repairs, you don't have to pay for the car insurance, you don't have the responsibility of driving yourself places." Oftentimes when people realize, "Well, maybe there's an upside to this too, and I can still get to where I want to go", then it becomes a little bit less of a struggle and less painful.
Emily Paisner: We thought it might be helpful to have you answer a few questions directly from our listeners. One of our listeners recently hired a home caregiver to help with her mother so that she could go to work during the day. Her mother said to her, "You've taken away my dignity." Our listener said that comment completely broke her heart. How do you deal with situations like that?
Jody Gastfriend: It's really tough. I hear so many stories about people who just don't want caregivers. They fire the caregivers, "I don't want a stranger in my home." Then what happens with the adult child is they'll say, "Well, I'm burning myself out but my mother won't accept anybody else, so it's got to be me", and that is not sustainable. Oftentimes, it takes time for a caregiver and a loved one to click. Sometimes it's just not the right dynamic. I've seen families go through a few caregivers, and then they get the right person and then it really works.
Imagine that if you were in a situation where all of a sudden you couldn't do basic things that you've been able to do your whole life, like getting dressed or going to the bathroom, that's really an affront to your independence. Sometimes it's easier to accept help when it's a little bit more removed. I often say, "Start with the tasks that people are more willing to outsource." We just did this recently with my mom, and she went through a period of two months needing 24/7 care after an injury.
She was, fortunately, willing to have help, but it was easier just to have someone do some of the household tasks than to help with the personal aspects of it, and that came later.
Emily Paisner: This is another big one that we hear from a lot of our listeners, "The cost for caring for a loved one is truly massive." How can people help to ease this financial burden?
Jody Gastfriend: One of the mantras that I will say is people need to plan ahead. Usually, people who are proactive are in a better situation to pay for care. Medicare doesn't typically pay for long term care. Medicaid, which is the health insurance for people who are income-eligible, often does but only in certain circumstances. You have to meet the criteria. They might pay for a nursing home but not home care in some states.
It really varies in terms of where you live. A nursing home can average $90,000 a year, but it's more than double that in some states. If you're paying out of pocket for home care which averages about 20 to an hour and considerably more in some places, do the numbers and add that up if you're having 24/7 care. One is to really plan ahead and to find out do your parents have any resources to pay for care? Do they have long term care insurance? Are they eligible for Medicaid or will they be in the future?
A good example is my father. We were paying for nursing home care which was expensive and my mother was quite worried that we were running out of funds. My father was a veteran, so we went through the bureaucratic process of getting him on Veterans Benefits and we did end up moving him to a soldier's home which is a veteran funded facility. The difference was $90,000 a year versus $9,000 a year. This is what resources, information, understanding, planning can help people with. If you don't understand the complexities of how to access and pay for care, you'll be at a disadvantage.
Emily Paisner: Since our audience tends to be full-time employees, is there a way that employers can better support their caregiving employees?
Jody Gastfriend: This has been an area I'm very passionate about. In fact, when I was going through this, I often tell the story that my dad was briefly living with me. My mom was in the hospital and I had caregivers come in the morning and my kids off to school and then I would go off to work. One day the caregiver didn't show up and I wasn't sure what to do. I had a really important meeting and I looked at my dad and I said, "Dad, how would you feel about coming to work with me today?"
He was in the earlier stages of dementia, so that was actually feasible. He said, "Okay." I actually brought my dad to work with me. I realized that was sort of a moment of reality that, "Okay, it worked for me today, but this is not a solution. There has to be other people going through this." It wasn't widely talked about and certainly, if you were going through it, you kept your mouth shut.
What has changed is that more employers are offering a range of support to people in that situation. Flexibility is really key because oftentimes you have to deal with caregivers or call doctors or take your parent somewhere in the middle of the day. I think employers that can provide that, it's a win-win. One of the key things that I have found in all the years that I have been focused on this issue, and it's one of the more intangible aspects of this, is having a caregiver friendly culture.
It's important to offer benefits, it's important to give information, but you also have to have managers who are trained in how to address the needs of caregiving employees because they also have to walk the walk and model.
Emily Paisner: How do you handle a caregiving crisis or a caregiving challenge?
Jody Gastfriend: I always say that it's important to speak up. If you are going through some kind of a challenge, it doesn't even have to be a crisis, but if you are realizing, "My dad lives across the country and I need to start figuring out what kind of care he might need down the road", this is something that might impact your job. The first place to start is with your manager. If that is not where you're getting information, speak to your human resource department.
Emily Paisner: What is one piece of advice that you can give to someone that you wish you had gotten yourself?
Jody Gastfriend: One of the things that I did not anticipate is there are unexpected gifts, and we had many with my father. There were many things that we learned from him that really astounded us. That he was actually able to engage with us even until right before he died. He had a sense of humor. My daughter sang to him and he would learn songs. It's hard to imagine, but there was still a quality of life despite the devastating illness. I think all too often people think, "They don't recognize me. They don't know my name. It doesn't really matter." It matters. Focus not only on what has been lost but on the person that is still there, because I think that will serve them well, and it will also really enrich your life too.
Emily Paisner: That's a great note to end it on. Thank you so much, Jody, we really appreciate having you.
Jody Gastfriend: Thanks so much. It's been a pleasure.
Outro: Thanks for listening to this episode of Equal Parts. See you next time.
Emily Paisner: Wait, before you go. I just want to tell you a little bit about Care@Work by Care.com. They work with some of the world's largest companies to offer family care benefits to their employees. If you're one of the lucky ones who already has care benefits at work, use them. If you don't ask for them. It's a real lifesaver. To learn more, visit care.com/careatwork. Again, that's care.com/careatwork.