As part of a lifestyle and aging series, we’re working with renowned photographer Terry Lorant to showcase inspirational leaders in the industry. Each month, we’ll feature one or a few inspirational member(s) of the Amazing Care Network community who is using his or her voice to empower others in the collective aging experience — and read, in their own words, what the Amazing Care Network’s efforts mean to them.
This month, we’re proud to feature Bob & Pam Funari. Bob is an ACN Board Member and both are ACN Members.
Bob: Cora and I connected when we both joined the board of a health care company here in Long Beach, First Consulting Group. I asked her to join the board of another company where I was the chair. Then, when that company got sold, she asked me to join her Sterling board. That was my introduction to Cora and her work. The Amazing Care Network came out of Cora’s vision about all of us getting to an age where we’re confronted with dealing with aging parents, which we both certainly are, and then concerns about “what about us?” because we’re not getting any younger. She saw a need to do something here to help people who are facing these challenges.
Pam: Cora was looking for people who had experience with difficulties with parents and their care. My mother has Alzheimer’s. I have two sons, as does Cora. Neither of us has daughters. Sons mean well, but as Cora often mentions when she talks to groups about Amazing Care, ‘I know that my sons would be happy to keep me alive under any circumstances’. I know that too, but sometimes there need to be others involved in those decisions than those who love us.
Bob: With my own parents, my mother died of liver cancer several years back. My dad is now 96, losing some of his mobility, and he needs assistance walking. Mentally, he’s pretty much with it. He’s got a tremendous positive attitude. He wants to live to be 100; that’s his goal. He lives without regrets. He’s a positive, forward-thinking guy, very engaging, still networking and making friends with everybody. I look at him and think about the genetics that are working in my favor. After my mother died, there was a funny conversation that took place, literally as we were planning my mother’s funeral. My wife at the time and my sister were sitting there, and my dad turned to both of them and said, “you know, I think I’m going to have to get remarried. I’m just too social.” He was 80 at the time.
Pam: A few months later he talked to me and said that he’d met someone, a younger woman (she was 2 years younger) and he was kind of afraid to talk to Bob about it. My own mother was 58 when my dad died, so I felt at the time that she would meet someone else, and I said that I was sure Bob would understand.
Bob: I think my dad wanted something very different when he married for the second time. He married Frances, this Southern Belle, from Alabama, 95 pounds, couldn’t cook a meal to save her life. One of her granddaughters came up to Dad just before they got married and said, “you know, you’re marrying into a very dysfunctional family”. Boy was she right! It’s been proven out over the last 15 years they’ve been together. Two previous husbands had died. They left her very well off. Dad was smart enough to have a pre-nup; he was an accountant, a financial guy. We redid his estate plan and kind of cleaned things up. Time goes by and they need in-home help, but they were resistant to the idea, and after a number of incidents they moved to assisted living. We were fortunate, we found a great community for them to move in to, a two bedroom, two bath unit. As we’re doing this, of course the issue came up of who is going to pay for it. And there’s disagreement there. It feels as if they are just counting the days til their mother passes on. They are counting on that money already. They’re pleading with my dad to pay for her grandson’s education.
I have good communication with my dad; he listens to me. Maybe you’ve had this experience, but the role reversal process is a very funny feeling. You grow up taking direction…your dad was the one who counseled and looked out for you, gave you advice, and now it’s flipped around. Now I’m the person saying “dad this isn’t wise…we really should be doing this…please don’t do this anymore, because you’re putting yourself in harm’s way”. He’s been pretty good about it. I have power of attorney, and am looking out for his financial affairs.
Pam: I’ve had to do the same thing, to take over my mother’s finances…it’s tough.
Bob: We are so blessed in so many ways. Even though we are here in California and they are back in Virginia, my sister lives 30 minutes away from them in Maryland; I have a cousin who lives not far from them, also in Maryland. They’ve kind of adopted my dad as their father and that helps a lot. We kind of have the mini village wrapped around my dad and that makes a big difference.
Pam: my mother is only 50 miles away up in the valley here, and my sister takes care of doctor’s appointments and things like that, but she can’t add two and two, so I take care of all the finances. A year ago, my mother’s diagnosis meant that she couldn’t continue living in the independent living place where she’d been for 6 years. She could bring in caregivers for the assistance, but the cost was more than moving into a nice assisted living such as the Sunrise where she’s living now. Her initial reaction though was to flip out and go on the attack against me and my sister. Physically. It was a real scene. The director came in and ushered us out. And while we were being looked after, my mother went out into the hallway and saw a sign that said “call this number if you think you’re being abused”.
She has Alzheimer’s, but high-functioning Alzheimer’s and so she called the number and told the ombudsman that she was at the Jewish Home for the Aging and that she’s been attacked by her daughters. And of course, the report led to a police report (even though the director of the home who was caring for US at that very moment affirmed that we were the ones who had been attacked by my mother…). The police came…the long and short of it was that she was held in the psych unit of the hospital for 2 weeks while we packed up her things and got her moved. That was a year ago. Now she’s the queen in her penthouse.
(They didn’t have a one bedroom available, so she got the penthouse for the same price.) And when she needs it, there is an Alzheimer’s memory care unit in the building. She’s at base level care there now. Already it’s $5,500 a month. She’ll be 90 in August. They recalibrated her medications which helped a lot and she sees a geriatric specialist at Kaiser. She’s gotten in to the community at the new place. If you ask her, she’ll tell you she teaches the art classes. As long as she’s not walking out into traffic, if she wants to think she’s teaching art classes, that’s fine with me. We deal with it day by day. Sunrise is a great company; they do a great job.
Bob: My dad and stepmother went into Brightview assisted living. There’s a continuum of care here that occurs. Meals and housekeeping are provided, and the residents can come and go pretty much as they please. My dad began losing mobility and started falling, because he kept thinking he could do things that he could no longer do. He fought the idea of using a walker. Frances said it made him look old (she still thinks they’re in their 40’s). Meanwhile, she’s gone downhill cognitively, and he’s trying to be the caregiver to her. It’s clearly putting a burden on him to be a caregiver at 97. So, we finally called a halt to that. We had the RN at the community do an assessment on both of them. After a couple of falls, dad needed a period of rehab. He needed some private duty care. So he has that now, one shift a day, 6 in the morning til 2 in the afternoon. And now Frances also needs private duty care, and we’ve presented this to her family. And it’s presented a huge challenge to them. Financial conflict again. Private duty care is $6,000 per month per shift. 3 shifts a day is $18,000 a month. So, she’s in and out of Brightview, spending part time with one of her daughters. At first we thought it might be a problem for my dad, but surprisingly, he’s adapted quite well. He enjoys the time on his own. The time that he doesn’t now need to be the caregiver…it’s made a huge positive difference for him. His mental abilities have gotten better. He almost seems like a different person. So it’s clear that getting that caregiving responsibility off his shoulders has had a very positive impact on him. It remains to be seen how long the daughter who now has Frances three days a week is going to be able to deal with it. We’ll see. It’s hard to predict where all this is heading.
In my dad’s generation, when we were growing up, nursing home care was just horrible. That made a huge impact on my dad and when we talked about assisted living, he was absolutely clear, “I don’t want to go to a nursing home, I don’t want to leave the house, because that means nursing home”. We’ve worked really hard to make it clear that what he saw his mother go through is not what his future will look like. After a year in his current assisted living situation, he’s willing to acknowledge that this ended up pretty good. In fact his exact words were “this is where I belong”. He still goes out to dinner 3 nights a week. He sings in the church choir. He was a singer in the Pittsburgh Metropolitan Opera when he was a young man. He sang with Mitch Miller. He’s always had a great voice…he’s always had that and takes great pride.
All of this makes us acutely aware of what other families are going through and have to deal with. One of the great sins in life is waking up in the morning and not being grateful for the things that you have in your life. In our case, we have so much to be grateful for. We have families with both sets of parents with financial means. We’re not forced into making bad decisions about where our parents are going to end up. We are fortunate to have other people we can turn to for support with what’s going on. In my case, I’m really blessed that we have family locally in Virginia who can step in. I haven’t had to fight battles of control over finances. The estate planning, all of that has gone exceptionally well. There’s a lot to be grateful for.
Q: Thoughts on Amazing Care as a business venture and model:
Bob: I think in a way what we’re doing with Amazing Care, is we’re conducting an R&D experiment. I don’t think we really know yet what exactly the Amazing Care Network will become. If there’s anything I’ve noticed about successful entrepreneurs, and I would put Cora in that category, is that they are experimenters. They’ll try something out, and if it doesn’t look like that’s working, well, ok, what have we learned from that? Let’s try another experiment and see if we can eventually get to a place where we have something that actually works.
Pam: As Cora originally said to me, ‘the reason I’m looking into starting an organization like this is I take care of my husband, and you take care of your mom, and who is going to take care of us?’ That’s what she was looking for Amazing Care to be.
Bob: There are many different facets of what the experiment has been doing. Certainly there is the ability to create networks. People who share a common set of problems or issues, appreciate the ability to get together with others who are facing similar challenges, then they can share things…’here’s what I’ve discovered, this has worked for me, maybe it’ll work for you…” and so that ability to go peer to peer is reassuring; it’s helpful to people. That’s one aspect. The second is the ability to plug in to a network of providers, people who can bring special skills or talents to help those struggling with some of these issues, maybe with their parents or maybe with themselves later on in life. The third is the financial aspect and how you can use Amazing Care as a vehicle to set aside the funds that are going to be necessary to address some of the longer-term issues that you’re going to confront. Fourth is how do you stay on top of what resources are being used to provide care for your parents or loved one? How do you have an audit trail, does it look right or does it not look right? So, there are multiple facets to this and we’re still figuring it out, which of these is going to catch fire, get traction? Is it a B to C kind of thing? Is it retail? Is it more wholesale? We’re still in the process of sorting through this. If there’s anything I’ve learned in 42 years in health care, it’s that R&D is an essential activity whether in the product business or the service business. R&D is an important activity, and you have to be patient. You have to let the experiments run. Not forever. You have to watch carefully to see what’s working and what’s not and when to try something different. I think that’s where we are.
The strength is Cora’s passion for this…that’s where it’s coming from. It’s all about her vision here. I will tell you, everybody on the board is willing to be persistent, to keep asking the questions, and look at what we have to think about doing to find the right combination or set of things to really get traction. Any enterprise has to address the question of how do you create value for people, because at the end of the day, that’s what matters.
Q: What’s one thing that you want to try next?:
Bob: I am definitely of a mind that the ability of people to monitor and stay on top of what’s going on with their aging parents financially, is a real need. Putting aside for your own future, that’s worthwhile, but the thing that I think has the most potential for impact, is the ability to give people comfort that they’re going to be able to stay on top of what’s going on with the finances relative to their parents’ care. Whether it’s being done through private duty care people, other caregivers, whether it’s being done through a facility, being able to have an audit trail with what’s going on with the numbers. I feel blessed that there’s financial acumen in our family. It’s amazing to me how many people have no clue, absolutely no clue. So, there is a need to have a way to stay on top of all of that for a lot of people. That’s where value gets created.
There are a lot of unmet needs (outside of what we’ve focused on with the Amazing Care Network) and one of the things that is appalling to me is the level of health care literacy in this country…the number of people who simply don’t understand how to navigate through the health care system. Even with my background and knowledge, I’m hard pressed to figure it out sometimes. The whole issue of health care literacy is a huge problem that leads to either lack of conformance around properly taking medication, or some people thinking the only place you can get care is the emergency room of a hospital if something happens. All of those things obviously drive costs in the health care system and frankly, make for an unsatisfactory experience for most people. Who wants to go sit in the ER for hours when you have a problem that could be dealt with if you have a primary care physician and a functioning relationship with that person?
Pam: Inside the assisted living place where my mother is, they told me it’s $21 a day to give my mother her medications. And then they called a couple of days ago and said, she’s one medication over the limit now, she has 11 pills instead of 10, so we have to bump her up one level and it’s now going to be $25 a day. To give her pills 3 times a day!
Bob: The issue of conformance and adherence in pharmaceuticals is huge. From the time that a prescription is written to the time it’s filled, the dropoff is 30 to 40%. Then from the time it’s filled to the time it’s actually taken, there’s another falloff, so when you look at ‘did the medication actually get taken by the patient?’ I think the yield is something like 30%. Another statistic that I think you’ll find appalling, the number of people who die annually in our healthcare system through preventable medical error is 225,000. Unbelievable. It goes on and on every year, and it’s one of the great hidden issues that we’re either unwilling or unable to confront and deal with.
You have to be careful about how much to take on.
I think the whole conversation around the end of life is a really difficult one, and I don’t think we do anyone a great service by pretending that you cannot have these conversations at a point where people are rational and lucid and where their wishes can be determined in a real way. It’s a personal issue. I have no interest in being a lab experiment when I get to that point. It’s all about managing pain, let me go in whatever way I’m destined to go. I don’t think we’re very honest with people about what that means, not only for the person experiencing the end of life, but also the cost of going through it. I’ve often said, perhaps half jokingly, that at the time of Medicare sign-up, everyone should have to make a choice for what kind of end of life care they wanted, and their premiums would be based on that choice. That would at least put the issue right on the table.