Talking With Julie Winokur: The Sandwich Generation

"Ed and I really thought we knew what we were doing," Julie Winokur says early on in The Sandwich Generation, an eloquent and sometimes brutally honest documentary that she and her husband, Ed Kashi, made while caring for her 83-year-old father. "We really felt like 'experts.'"

For seven years, Winokur, a writer and filmmaker, and Kashi, a photojournalist, had photographed and recorded the stories of old people for their book Aging in America: The Years Ahead. The experience left them with strong opinions about nursing homes and the advantages of in-home care. So when Winokur's father, Herbie, began to experience the effects of dementia, they uprooted their two children and their businesses and moved from San Francisco to New Jersey to care for him.

For two years, Winokur and Kashi took care of Herbie in their home, with the help of hired caregivers. Throughout the two-part film, they talk about the "hidden gifts" that taking care of Herbie gave them and their children, and the rejuvenation they felt in the moments when he showed the will to live. "I want to show up for my father the way that he has shown up for me my whole life," Winokur says in the film.

Yet the couple was also stunned and overwhelmed by the enormity of care giving. A remarkable aspect of the series is that, because each part chronicles a year in their life with Herbie, viewers witness the growing physical and emotional toll that care giving took on them and their children. They confess that at times they resented Herbie's presence or wished "the problem" would go away. Kashi talks about the "corrosive" effect of watching someone deteriorate, and Winokur admits to feeling that she was giving away the "prime time of my life." In Part I, also called The Sandwich Generation, their children -- Isabel, who was eight when Herbie moves in, and Eli, age ten -- say it was "cool having Poppy around." By Part II, Living With Herbie, even the kids seem exhausted when they talk of the "stress" Herbie's care put on their parents and the time it took away from them.

Trailer for The Sandwich Generation

Herbie Winokur died in January of this year, shortly before Life With Herbie was released. Looking back now, how does his daughter feel about the care-giving experience?

Q. At one point on film, you say that when you began caring for your father at home, you would have advised others that they should at least try it -- but a year into it, you weren't sure that it was the best way to go. In retrospect, do you think it was the right thing for you and your family?

A. Absolutely.

Q. And for Herbie as well?

A. Yes. It was such personal care. It was one on one, it was attentive, it was tailored to his needs -- it was not cookie-cutter care giving. You know, anytime you're in an institution, they can't give you the one-on-one care; it's just not practical.

Q. How did your family come out of the experience after your father's death?

A. We're still coming through it. There is this kind of suspended animation in our house now. We were assuming that we would feel relief when he was gone, but I don't think that relief is an immediate feeling. We have a lot of space and I have a lot of relief in the sense that my time is my own now, but there's a hole. There's an emptiness in our home.

Q. You mentioned in the first film that you felt like you were giving away the prime time of your life.

A. It took a toll on us. It definitely aged us. It was overwhelming at times and my work suffered, but yes, I would redo it. Because on a moral and spiritual level, it was rewarding, and my conscience is very clear. I feel like I gave him the best I could.

Q. What do you think your children got out of it?

A. It's funny, because their rote response was that they got to spend time with him that they otherwise wouldn't have had. But I think they got a much deeper message about the meaning of family and loyalty, caring, sacrifice, and rising to the highest calling.

Somebody said to me that their grandparent had been in the household when they were a child, and when the grandparent died, they felt tremendous guilt because they were always wishing the grandparent was gone. They thought they had caused it. That didn't even dawn on me until this person said it. And I thought, perhaps my children feel some of that, because there probably was some jealousy and resentment on their part.

Q. Did you talk to your kids about that?

A. I've talked to my daughter about it a bit and she says she doesn't feel that, but I'm not convinced that she has come to terms with all the emotions she's feeling.

Q. You said that your children were better than medicine for your father. How?

A. I think we see ourselves through the reflection of other people. So when you put yourself in an environment where everyone around you is in their 80s and facing decline, how can you not see yourself that way? And I think it's a much more natural state to be in a multigenerational environment. You see yourself as being more vital and younger, and part of a continuum. And I think that having kids around is this constant reminder of the child inside you, the child that is still you. The kids engaged with him a lot. It brought out his humor and warmth, and kept him on his toes.

Q. Your daughter was a little afraid of Herbie before he moved in. Did her feelings evolve after he came to live with you?

A. Isabel was a little scared even to touch him because he was old. It was very off-putting to her. And it's funny, because she got to the point where she literally would pull flakes of skin off of him. I wouldn't even do that. But that's how comfortable she got with him, like he was an extension of her body.

Because my son was older, he became much more conscious of helping his grandfather. He took greater responsibility and recognized when my father needed some kind of hands-on help. So they both got way more comfortable with him and didn't look at him like he was "other."

Q. Do you think what they gained outweighed whatever they lost from their parents?

A. I do. It's a very rich life lesson. It's not something you can teach somebody. They have to experience it.

Q. Yet it seemed that you and Ed felt guilty that you weren't there for the kids as much as you wanted to be.

A. I think that's true. But the thing that I feel guilty about now is that I wish I had not let on to Herbie how stressed-out I was. Because I'm sure that made him feel bad. Who wouldn't? You feel like an imposition. So I wish I had done a better job of containing my frustration, or my stress.

Q. That would have been pretty difficult under all the pressure.

A. Yeah, I'm human.

Q. How did your work on Aging in America influence your decision to take care of your father at home?

First of all, that project is the reason that we ended up taking care of my father. We became so informed and we were kind of talking the talk, so we thought we'd better walk the walk. We saw people who ran the gamut, from depressing nursing home scenarios to living alone and having family pop in periodically. And we looked at what we would want for our own old age. So when my father got dementia, I think we really felt a calling. It's as if that project was the dress rehearsal, and then it was prime time to make good on what we had learned. But even though we walked in with eyes more wide open than most, it's still like parenthood -- you can't know it until you're in it.

Q. Did your research give you definite ideas about the optimal home situation for elderly people?

Yes, and that's home-based care, because I'm just not a fan of institutional living. There's no "one size fits all." I've heard lots of stories about people who go into assisted living, and they wish they had done it sooner because they have a social life and all this. But while I think that staying at home is optimal, not being isolated at home is key. To have family involved is also paramount. And elderly people shouldn't have to be asking for the care -- I was really struck by how many people felt like they were a burden on someone else.

Q. What was the biggest surprise to you?

A. Discovering my limitations! I thought I'd be able to handle it better. I just wasn't prepared for how all-consuming it was going to be. And we had about as much help as anybody can have and still be hands-on.

I believe strongly that you need to treat it like a marathon, not a sprint. I wish I had that mindset from the beginning because although it can end suddenly, it's much better to prepare for a long trek. That means you have to pace yourself, and to pace yourself you need breaks, and finding ways to take breaks can be difficult. I know in theory you should do respite care, but it's not that easy. You just don't take an 83-year-old with dementia and move him into a facility for two weeks. It's very disorienting to him.

Q. Did you learn how to pace yourself?

A. Not really. While you're in it, you're swimming, your head is just ricocheting, and it feels very overwhelming.

Q. To me, one of the saddest things you said was that every day you saw your father slipping away until the man who was living with you wasn't your father anymore. What kept you going as he became less and less recognizable to you?

A. I think that there was always the glimmer of the old Herbie -- there were pieces of him that survived. So it was that and the fact that he was so appreciative that kept us going. There's no question that he felt safe with us, and when you're entrusted in that way, you want to come through.

Q. What was he like before the dementia?

A. He was a lawyer -- very outgoing, gregarious, and generous. When he turned 80, we saw a really pronounced shift in him over a four-month period. I thought he had had a stroke and we put him through all kinds of tests at that point, because the change was so noticeable. Then we found out it was dementia. I don't know if it was Alzheimer's or not. I opted not to have him tested in depth because there was nothing they could do for him. I took him to a couple of specialists who said they could run a battery of tests and find out exactly what type of dementia he had. And I said, "To what end? If you can medicate and treat it, then absolutely. Or is this just for our own edification?" And they said it was really for our sake. So I opted not to go that route, because I thought it was very demoralizing for him. It was obvious that he was slipping, and that was all I needed to know.

One thing that's shocking when a parent has dementia is how their social circle drops away. Their peers are terrified of it. They don't know how to deal with it and it's hard for them to be around it. After Herbie moved in, they would visit periodically but then they stopped visiting.

Q. At the end, Herbie got pneumonia and never fully recovered. Was he in the hospital?

A. No, we had a family doctor who made house calls. I can't advocate for that enough. It's like night and day for the elderly and the chronically ill to have somebody who will come to them versus not having that.

Q. What's the main thing you wish you had known before becoming a caregiver to your father?

A. I wish I had known just how demanding it would be to manage all of the caregivers. That was not on my radar. You don't just hire caregivers; you have to oversee them and monitor them and keep them all happy. They had issues with each other -- who did what job and who left what job for one of the others to do -- so I ended up taking on management issues. The bickering between the caregivers added a layer of stress that I never anticipated.

Also, the nighttime caregiver ate dinner with us seven nights a week. I wish I had known in advance that this is someone who becomes a family member.

Everyone I've talked to has one issue or another like this. "The caregiver isn't serving healthy food to my parents," someone will say, or "When I come and visit, I'm shocked that X, Y, and Z isn't taken care of." You know, the house hasn't been kept clean, or the person didn't think to take their parent to a specialist, or something else.

Q. You said on film that it would have been easier for everyone if you had given up your work, but that you needed to work to keep your sanity.

Yes. It's so rewarding to go to work and get recognition for your professional self and be financially compensated for your efforts. As anyone who has parented knows, when you're in a care-giving role, your reward is just that the person you care for is thriving. It's a big reward, but it's a little bit hard to quantify on a daily basis and feel satisfied. I think it's very hard to be so selfless that someone else's happiness is your compensation.

Q. What advice do you have to other women who are working, taking care of families, and care giving for a parent?

A. You need support. I know it's much harder when you don't have the financial resources to hire someone. Then you have to lean on senior centers or places that are subsidized. But the biggest mistake is to try to do it yourself. You just can't do it all.

Q. What kind of situation would you like when you get old?

A. I hope that my kids will take me in when I need it, because I would rather be with family. I don't want to be surrounded by only old people. That just doesn't feel like the cycle of life.


almost 3 years, said...

Well written article! In-home care is a really great option for the aging-in-place population. Maintaining independence for your loved one goes a long way toward improving their overall health outcomes. We're United Medical Care LLC and we provide in-home health care services in Maryland. Our caregivers can assist with daily living needs and provide respite care to family caregivers as well.

about 3 years, said...

I am caring for my 83 year old mother with dementia, as we speak. I always knew I would do this, but I did not really think it through or make any plans. My brother and I decided that it would be my role, and he would relieve me occasionally. I always thought my degree and license in social work would prepare me to do this. I truly am glad to find this story, and will look at the trailer, and read more as time goes on. I need to prepare my mothers lunch, which seems like all I do.

about 6 years, said...

that was a very heartwarming experience. Filipinos can very well relate to that because it is in our culture that our parents and grandparents alike are very well taken cared of and needs provided until their last breath and even after death they are deeply remembered...

over 7 years, said...

What an endearing and illuminating testimonial by Julie Winokur. Truly worth digesting every line of her interview after watching the trailer.

over 9 years, said...

My mother died of Lou Gehrig's Disease in 1999. I was a mother, expecting mother, wife, daughter and a caregiver 24/7. Where we lived we were unable to ask for help from caregivers so I took on the role of providing all the care of daily activities for her and was lucky enough to keep her home. Mom taught me more than I would have ever learned being a Certified Nursing Assistant. She taught me the true meaning of dignity, respect and put me in the right direction to help other family's and caregivers. I now own a Home Health Care Agency in a rural community. I am able to work with the clients, families and with my caregivers on a daily basis. When I started my business I told everyone it is not because of the money it is a dedication to my mom and for paying forward a remarkable reward she gave me. So in her memory, my staff and I take care of families in need and we are able to keep the One-on-one care. I would like to say to all family caregivers that you all are remarkable and have a special place in my heart because being a caregiver is a gift. Treasure it and embrace it, but most importantly embrace the person you love even through the rough time,in the end you will have something that no one else has and that is their untold love and gratitude for you. May God Bless you all.