An estimated 48 million Americans provide care for someone over the age of 18. Caregiver Melissa Fisher shares her personal experience with Jim Cagliostro and asks, how can we do better? 

 

Episode Introduction 

Melissa shares the four challenges faced by caregivers today, calls on doctors to recognize family and patients as a ‘’unit’’, and highlights the ‘’unpaid, untrained, overwhelmed, burned-out’’ reality of caregiving. She also emphasizes the need for a pathway for dementia care, and asks why the beginning of life is so well-orchestrated in healthcare, but the end is not? 

 

Show Topics

 

• The rise of caregiving 
• Four challenges facing caregivers
• Patients and their families are a unit
• What we don’t measure, doesn’t matter
• ‘’What do you think we should do?’’
• Creating pathways for dementia care
• ‘’Don’t shut me out!’’

 

07:04 The rise of caregiving

Melissa outlined the complex reasons that have led to an increased need for care.  

‘’It just feels like all of a sudden we're all looking around and going, "Oh my goodness. We've got a lot of people who are needing care." And we also used to live in close proximity to one another. My parents, they moved away when I graduated and pursued their lives where they wanted to be. So I understand it, but we're spread out more. Kids move from rural towns. They're going to other parts of the country to make their way. They aren't staying in the homestead anymore. We also are having children later. My parents were able to save more, and many of them had homes. Americans are also, as I'm starting to realize, fiercely independent, and that's part of the problem because my mom sees her position as if I am there and helping her, then she is losing her privacy. She wants to maintain her own home. But I think back another generation, and my great-grandmother lived with my grandparents all under one roof. They helped with the raising of the children. So it just feels like there's been this shift in who's caring for who. People are living longer, but not necessarily better. Half of all caregivers who helped older adults do so for someone living with dementia, and 83% of those are family members, and many of them are still working.’’

 

09:51 Four challenges facing caregivers

Melissa said most caregivers are ‘’unpaid, untrained, overwhelmed and burned-out.’’

‘’Those would be my four (challenges facing caregivers). Time, cost, personal health, and training or resources. Time, I work a full-time job, and it's demanding. I absolutely love what I do and the organization I work for, but I am strained to find time for it all. I think that I'm not alone in that, and talking to my friends and reading a lot of things online. I know that time and its finiteness is that I just don't have enough of it. Also, money. If I've learned one thing, it's either I need to be extremely rich or incredibly poor. I know that sounds really blunt, but getting access to support and services for the majority of Americans right now is not feasible. If you can't afford help, then who's going to do all the work? Unpaid, untrained, overwhelmed, burned-out individuals, likely adult children, are that. I've become a bit of a cynic because I see my father in a nursing home, and my mom is paying $12,000 a month for his care, and the person in the bed next to him is on Medicaid and paying nothing. Again, I want care for everyone, but I'm also recognizing that I either need to be really well off, and then who's helping pay for college and all the other things and costs of living that are what they are? But money is, to me, a massive challenge. Personal health stress means personal needs move to the back burner. Physical and mental health are compromised. Case in point, I've had a couple of really bad mental health situations where I was overwhelmed to the point of even causing, I don't know what you call it, stress hives from head to toe. I have felt depleted. My eating, my movement, all things have been sacrificed at some point in time. I think a big challenge for caregivers is how does one... Because people say, "Oh, make time for yourself." When?’’

 

15:10 Patients and their families are a unit

Melissa outlined the difficulties in getting the right care for dementia patients. 

‘’ Get us connected. Think of us as a unit. When my father was diagnosed with FTD, finally, after three years of trying to get help in a diagnosis, I started saying, "We all have FTD." Often, how we come into your systems is events. It's initiated, not as a preventative or proactive planned thing. It's usually a crisis.  I read something the other day that really hit to the problem that ends up in our emergency rooms. 75% of families have been about their needs with their older family members. As a result, they're showing up in the ER, and now the talk needs to happen. Believe it or not, these moments of crisis in the ER are often the first time that things are being discussed. So that's a case in point, and I'll share a little story about this, but I would say that before we end up in your ERs, our primary care providers have an opportunity that needs to be formally presented. That is conversations with their elder patients about what they do when something happens and get them set up to make sure that someone is supporting them. One of the biggest issues that I'm facing right now is that I don't feel connected to my mom's care. When she goes in, she goes in the morning, she spends 2.5 hours getting her hair and makeup done, and she does her very best to show time. That's a term that a lot of people know about, where we're going to show up and we're going to show that doctor, I am fantastic. Really, they're not. But if you start checking the boxes, do they have POA? Is somebody on their medical? Are they proxied? Are they part of the electronic health record? When your disease progresses, what plans do you have for your housing? You mentioned you live in a two-story home with no full bath on the first floor. What are your plans? I think these talks have to happen with the patient much sooner. I think that it has to be a part of the formal exam. I don't necessarily think that's happening because every time I try to have these conversations with my mom, I feel like we're talking about asking her to go relocate on the moon.’’

 

27:11 What we don’t measure doesn’t matter

Melissa said healthcare can’t improve unless hospitals ask caregivers about their experience. 

‘’I felt like I was staying in all those situations, and what we don't measure doesn't matter. If we're not asking the right people many times, how can we learn if we don't ask the caregiver about their experience? We're not asking caregivers. I find that interesting because my mom in the hospital can't clearly even remember that she broke her hip and/or femur, and yet you're now sending her an after-patient survey. Then I'm looking at it, and I ask her, and she's like, "I don't know. I was on so many medications." Are you getting what you need to process improve? I don't know how, so I just want to call that out. Then for rural healthcare systems, which my parents are in a rural place, technology, I understand is expensive, but if you don't make investments in it for the caregiver, that's detrimental. The manner in which I have to communicate with my mom's primary care provider is woefully behind. The visit summaries are vague. They're not written in a way that I can decipher what they talked about in their exams. I'm actually heading to where my mom and dad are this Saturday, and I've asked for her next appointment, which I will be present in. Please tell me what your caregiver communications plan is moving forward. I'm asking, I want to know. Are we having a five-minute call after mom's appointment, or are you calling me in? Or are you going to start writing after visit summaries that don't remind me that my mom once had a C-section? That's the top of the notes. I'm like, "Come on, it says she's married, but it doesn't say she lives alone." 

 

33:08 ‘’What do you think we should do?’’

Melissa explained the difference when a doctor finally included her in decision-making. 

‘’I insert myself a ton, but it's sending it out there. So if she comes to visit me or I visit her, I always send a message back to her doctor and say, "Here are the four things, or whatever number." And I bullet them out, respecting her time, and I say, "This is what I'm seeing. You need to know this because you're not seeing this. Because you have 10 to 15 minutes with my mom on a visit, and she has all these things going on with her, but you're not seeing this." But let's just say this. So I mentioned my aunt's initial encounter with area hospitals and all the emergency rooms she attended. But the first one during her 10-day stay was where I finally felt like I was part of the team. The assigned hospitalist who had just come on for his next long shift, we got really lucky there, so we had one hospitalist at the beginning, which made it much better with me. He addressed my concerns. He huddled. We found times when I would say, "I'll be here today. When are you round?" And he'd tell me his rounding time. Then I would be like, I think he was impressed. He was like, "Okay, let's huddle." And he's like, "God, do you work in healthcare?" I knew what words to use, but he's always checking with me. He called me proactively. He even called me and asked me questions like, "What do you think?" There is nothing better. I'm getting goosebumps just thinking about those conversations where he's like, "What do you think we should do? What do you think about the medications?" That's great. I wish more asked me for opinions and thoughts, I know not everyone is as involved.’’

 

38:24 Creating pathways for dementia care

Melissa urged hospitals to act now to develop a model of care for dementia. 

‘’Wherever they may be, caregivers as a group are coming together. Know that. There have been recent federal and state bills to address the rights and needs of caregivers at the policy level. In April, the president signed an executive order to increase access to high-quality care and supporting caregivers. The order directs health and human services to consider testing a new dementia care initiative that will include support for respite care and provide more support to family members, when caregivers, when a loved one is being discharged from the hospital, get ahead of it. Don't wait for the policies to be enacted. Differentiate now, and I'll say that again. Treat the patient and caregivers as a unit. Develop a model of care for dementia. I heard that UCLA designed a dementia care program. They tested it. It statistically reduced patient behavioral problems and lowered caregiver distress. It's not new news, but I ask myself, "Why hasn't this been widely spread?" We have pathways for cancer. We have pathways for cardiac and other diseases. Why should dementia be any different? Palliative or not, do not discard the needs for therapies and ongoing support.’’ 

 

42:07 ‘’Don’t shut us out‘’

Melissa offered strategies to improve care and urged healthcare providers to consult caregivers. 

‘’Identify and evaluate your survey tools. What survey do you need? Do you really improve things? Does it even exist? I know and understand that CMS is the driver for most hospitals, but so is consumer choice. If you weren't talking to me, you don't know how I feel about your brand, you don't know how I feel about your system. That's critical. Yes, CMS, we need to look at them and think about what's missing in their metrics as it pertains to caregivers. But that's going to take more time. So why not now? And I think we should be looking at home health too. Transitions to home care, especially for dementia patients. Not just upon release from your brick and mortar. Where is the next opportunity? And challenge your models. Empower your teams to look at the care they provide through the lens of the caregiver. Incorporate more dementia training, and let us help it design it with you. That's my big one. Don't leave me out of it. Help me help you and be a part of that design. Ask me what you could do better. Ask me where you see opportunities. Tell me your pain points. So that's what I want to say, Jim. I think that's the big opportunity here. We're partners in care for our loved ones. Don't shut us out.’’

 

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You’ll also hear: 

 

Calling on hospitals to do better: ‘’It's all been made more challenging by not feeling like I'm seen or recognized by organizations and systems. I have experienced barriers. I've watched my own mom's rapid decline after years of being my dad's caregiver, and I keep having to ask myself, "Can't we do better?" 

A difficult experience during hospital discharge: ‘’Those transitions in care have me thinking, "How can you just discharge her?" And it was very fast, like rapid fire. They wanted to get someone else in the bed…. I was thinking about when I was discharged after having my baby, which is a long time ago, but I got loads of help, classes beforehand, and follow-up. Why is the beginning of life so well orchestrated, but the end is not?’’

An ‘’on the job training experience’’: Why the best help for caregivers doesn’t necessarily come from the doctor’s office or on hospital discharge. 

Caregivers need to be given more credibility and included in patient care: ‘’….just trying to get people to believe us is a big problem. They're asking the questions of (the patients). My aunt, when she was being bounced around the ERs, they were talking to her, but yet we're all over here shaking her head, going, "That's not true." Or, "That's not real." She was delusional. It sounded true. It sounded real, but it wasn't real.’’

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