Elyse Weber-Sacks 12/2/24

(This interview has been edited and condensed for length)

Zack:  Can you tell us a little bit about your story?

Elyse:  I was going to ask you how you're defining caregiver, because… I think of caregiver in one way based on the work I do, and I think you may be defining it differently. But in terms of my story okay. So, I have an MSW.  I went directly from college undergrad to graduate school, and… my longer-range plan was to eventually become a psychotherapist and use the MSW as sort of a steppingstone for that…. I worked in medical social work for a bit after I got my master's and then… I started second guessing my decision about social work as a profession and wanted to try something else….  I ended up going into business...  and then largely due to some issues with my kids or my son in particular, I needed to get off that track, because it just wasn't working for me as a working mom.

So, I took my social work background, and my now extensive business experience, and I married the two…. I always loved older people…. My grandparents lived across the street from me. I saw them almost every day of my life…. So, I took both of those backgrounds [social work and business], and I kind of married them and went into geriatrics…. I worked for a large regional chain of nursing homes and did some things for them with marketing, and then I worked in hospice doing physician education…. Then I heard about geriatric care management.

I do feel that everything, all my whole career has led me to this place. So, I’m very happy that I took that journey. I often describe it as really a niche profession. The awareness level is still rather low. I mean, it's a challenge, and because I'm on the board of directors for our professional association, this is something that we talk about all the time, about building awareness.

Zack:  Can you share a little bit more about your personal caregiving story?

Elyse:  … I will share with you that I have two parents in their nineties -- my mother and my stepfather. They live in Florida, and they've been independent until January of this year when everything kind of crashed. I now have this very different and, I think valuable, perspective of not only running a practice with all the clients that we care for… but also personally living through being the daughter…. I've hired a colleague down there to help me because I totally understand the value.

So that part has been good, but it is giving me a very different perspective on things, I have to say…. I thought it was important to share that because that's kind of been consuming my life. I'm leaving on Wednesday to go to Florida. I've been going every month for a few days, so, it's really challenging. I know it would be challenging even if they were up here but having to get on a plane and I'm running a business, it's just tough. So, talk about wearing a lot of hats and being stretched very thin. That's kind of where my life is right now.

Selma:  In terms of your work as an Aging Life Care Professional, I had no idea that people like you existed and the roles you play in supporting family caregivers. I think it would be helpful if you just share with our readers exactly what it is that you do.

Elyse:  I just want to say that we hear that all the time when people do call us.… That is such a common refrain, and I guess speaks to, as I was saying earlier, the lower awareness of the profession. What we do, my group and the majority of people who are aging life care professionals, which means they have to be certified in part of our professional association… the vast majority are nurses and social workers, some gerontologists, some physical therapists, occupational therapists, some allied professions, some psychologists. But the majority are nurses and social workers…. We're hired mostly by… adult children, or niece or nephew, or sometimes a guardian… and usually, it's a crisis. I mean, as much as I love people who hire us proactively, and there are some of those, but the majority are people in crisis. They thought they were sort of managing. It was like a house of cards that was okay, and then some event happens, and that house of cards falls apart, and they don't know what to do. 

Sometimes it's a hospital chaos situation where they're being told a lot of things by a lot of different people, and they don't really know which way to turn, what to do. Sometimes it's post hospital and they're in a rehab situation, and they're being told that the person can't return home because now they're not able to do x, y, and z, and they don't know what to do. So, we step in and do our assessment and we go to the home, and we look at the whole situation. And then also finances, because for most people, unless you're very wealthy, planning for care… is very expensive. So, it's important to make good decisions…. You could make very costly decisions because you do it yourself, and then you don't know certain pitfalls and so on. 

We do a holistic approach and look at the near term, like the immediate need, why they hired us. But then I always like to look at the longer view also, things to think about, perhaps do the due diligence so that when something happens down the road, they already have done their homework so to speak and so on…. One of the bread-and-butter things that we do is, helping to coordinate medical care for people. Being present at doctor appointments, making sure that one specialist knows what the other one is doing, that the right questions are asked, that it's not a matter of when the older adult says, “What did the doctor say?” They say, “Nothing” …. That's when health care outcomes are poor when things are not followed up and so on. So, we are the quarterbacks for all of that…. And sometimes there are decisions that have to be made or things that have to be monitored… in most cases, if there's not somebody who's quarterbacking those kinds of things, it doesn't go well….

Selma:  When do you think is the appropriate time for the family to reach out to someone like you? How will they know when the time is right to do that? Do they have to have a crisis?

Elyse:  That's a great question. I mean, as I said before, we do get a lot of people who just sort of put it off, or they put their heads in the sand, or honestly, there's a lot of denial out there about changes that people see in their loved ones, cognitively in particular… so the best time really is when… there's a chronic illness that's likely to follow a certain path, or certainly any cognitive changes that people notice. I mean, normal aging, yes, people get a little forgetful here and there. But most of the time, families will say, “You know what? I noticed changes five years ago, but I didn't say anything.” 

So, it's best to get us involved at the early end when we can really be most helpful in terms of planning and monitoring and being support for the family. Because that's honestly another role we play in addition to what I mentioned. We become part of the support system, and more often than not, we enable the adult child to play their unique role, which is nobody else can be the son or the daughter. And that's a precious role to most people. But they often get put in the role of caregiver and caretaker and maybe sometimes harasser, things that they see that their parent doesn't want, and it does often damage the relationship. We can be that buffer and serve that role and really preserve that parent child relationship to a large degree.

Zack:  Why did you decide that you needed to reach out to a colleague and hire somebody to help you with your parents?

Elyse:  Because I know what I'm facing… my stepfather, he's a classic. He fell and broke his hip. He was totally independent, and he just wasn't able to rehab…. He tried, but it just wasn't successful at 94. And my mother who was an incredibly competent person. This has been very hard for me to witness because she's been my role model in many ways and, to see her deteriorate…. So, I knew that I couldn't manage it all from up here…. I needed somebody local to do the quarterbacking just… as I described before. I mean, you know, taking my mother to doctor appointments. My mother had stopped driving, and my stepfather is not doing well. So, it's just too much, especially long distance. I mean, even if they were local, I might have still considered it, but especially long distance. I knew I needed that help, and those eyes and ears on both of them.

Zack:  What are some things that you see? I imagine you have a long list, but if you could pick a couple of things that you see that you can share for the benefit of working caregivers. This might be some things to be on the radar and may be avoidable.

Elyse:  Sure…. Trusting your gut is important. If you start to see changes, don't dismiss it or rationalize why it's not really there, and try to seek out some assistance. Also, the family dynamic… and this is where being a social worker does come in handy, because there are some families where everything is very harmonious. But there's also just as many where siblings disagree and sometimes the louder sibling, if you will, personality wise, if not actually voice wise, is the one that dominates, and everybody cowers and doesn't really want to cross that sibling. And it does a disservice to the parents. So, I think just sort of keeping your eyes and ears open, not letting that kind of situation get out of hand….  And understanding that there are things you don't know. That aging, the way it is today, with people living as long as they do and so on, it's really not a do-it-yourself, DIY as the vernacular goes these days. It's not a DIY process. It really isn't. People with the best of intentions often make decisions that, and choices that are not in their best interest. I think it's important to just recognize that and understand that, and seek help the same way you would to do your taxes or to get legal advice…. For some reason, people think, oh, I can handle this. I can do this. And some people are okay with it. I'm not saying it never works, but it often doesn't. And then you get a situation that's not what anybody wanted.

Selma:  What should a family member look for when they're looking for that aging life care professional? 

Elyse:  I am a part of the Aging Life Care Association, so aginglifecare.org… there's a very user friendly “find an aging life care expert,” part of that website, and it speaks to some of the things to ask about. I would say, certainly ask about somebody's background, their education, their credentials, their experience. It's a big responsibility to do this work, so there's potential for liability issues and so on… so I think somebody has to really ask those probing questions about somebody's experience and how they know that they can do this. 

Selma:  How do you think your experience in your professional role impacts your caregiving experience with your parents now?

Elyse:  Well… I'm seeing everything to do with my parents through the prism of them being my parents. I try to look at it objectively, but the reality is I can't. That is one of the benefits of having an aging life care professional because everybody looks at their family through the prism of it being their family. It's just the reality… with all the baggage, all the history, all the good, the bad, all of it. I'm very aware of that…. Where I do think it has been helpful at is I ended up moving my mother into a memory care facility. And… even though it's Florida, it's not really that different at all, so I was able to advocate for some things there…. I think that my role as an advocate, and knowing what I know, I think that really served me or, more importantly, my mother well.

Zack:  What would you go back to, before all this started happening and tell yourself to prepare for? Like, the monthly trips that you're gonna be having to take, which are a burden as well as a good thing that you're doing? Or dealing with presenteeism. You could be dealing with a client, and you've got in the back of your mind, you're advocating for your mom and you're waiting for a phone call back. There's just so much that goes on. What would you tell Elyse before she got on this journey to get ready for some of this? What kind of setbacks?

Elyse:  I think I would not have accepted some of their [my parents’] pushback saying that they're managing… and just really put my foot down and my brother along with me, honestly. There were things that had to change and they had to let us into their affairs because that was the other piece of it. We really were blindsided by, a lot of this stuff, and I'm handling all the finances now and all of that. I think that we were too deferential…. I respect my mother tremendously and I wouldn't change that. But I think we were a little too deferential, and we should have just really put our foot down, and it would have served everybody better now.

Zack: That is a tough conversation to have. Do you have a suggestion, like how you coach some of the kids that you work with to help your clients? Do you have a suggestion on how to even begin that conversation?

Elyse:  You know, it's different for every family, honestly, because the dynamic is different in every family. But I think at least starting it, taking baby steps, it doesn't happen in one conversation, and I think that to have that expectation is unrealistic. It's a process like a lot of things, and I think it's better to start it sooner, than later…. Sometimes a tool in our toolkit when I talk to clients or, I mean the adult children, and they say, oh, my mother, will never accept help or whatever, is make it not about them. Take the onus off them and make it about you as the child, because most parents still care even when their kids are in their forties and fifties and sixties. They still have that kind of dynamic where they're caring about them, and to make it about peace of mind for the children, that this is something that gives them peace of mind and support and help for them, not about the parents. And that often does work.

Zack & Selma:  Thank you so much, Elyse.