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Norell Wheeler, a family consultant with the Family Caregiver Alliance, discusses financial, emotional and physical challenges facing those caring for loved ones.

Demystifying Data

Demystifying Data is a recurring series examining the numbers and statistics that buzz around the Bay Area. The Bay City News Foundation brings context and expert input to the data in our everyday lives. We will bring your questions to those who know best to understand the big picture behind complex figures. Check back weekly for new numbers, broken down by the experts.

Family caregivers face higher rates of depression and anxiety, while 45% have encountered at least one financial impact due to their role.

The National Alliance for Caregiving and AARP reported in their Caregiving in the U.S. 2020 report that caregivers face significant emotional, physical and financial challenges due to their work.

The Stanford Center on Longevity also reported that those caring for loved ones with serious illnesses and ailments experience diminished happiness.

Norell Wheeler, a family consultant with the Family Caregiver Alliance, explained some of the unique challenges facing family caregivers and the inequities within the community. Wheeler’s organization focuses on supporting caregivers in as many ways as they can, through as many resources as they have.

This week, the Bay City News Foundation hosted Wheeler, who works across much of the Bay Area, to shed light on some of the best ways to support and solve issues facing the increasingly expanding caregiver population.

Wheeler’s answers have been edited for brevity and clarity.

Q: What does that kind of support for caregivers look like on a daily basis for you?

A: We provide services to caregivers of adults who have some type of physical and or cognitive impairment such as Parkinson’s, stroke, Alzheimer’s or any other type of dementia. Our agency has been doing this for 40, almost 45 years this year. Believe it or not, as a consultant one of our requirements is to provide ongoing support. Through the assessments we offer caregivers, which entails care planning, offering direct care skills, wellness programs, respite services and also legal and financial referrals.

Some days it’s completing assessments and discussing care planning as well as discussing the caretaker’s overall well-being, as it fits into their role of caring for a loved one or friend or family member, and also assessing activities of daily living. Really what we’re assessing for is actively supporting the caregiver, and just really seeing what ways we can support the caregiver.

So sometimes you have caregivers who are coming to us because maybe they’re ready to look at and explore hiring in-home care. We will give them some resources around that. It could be we’re sitting there and we’re listening to the emotional and well-being side of the caregiver where we discover that there’s a lot of anxiety and depression. Maybe it’s on top meeting the other needs that they have, it’s referring them to individual counseling as a part of one of the services we offer.

There’s other times where we focus on long-term care planning and so that’s really teasing finding the needle in the haystack of what the caregiver has put in place to prepare for long-term care planning for the care recipient. Does the care recipient already have a living will or trust? Are those important documents in place? If something happens to the primary caregiver, our client, then what happens or what’s in place to care for the care recipient to continue the care?

We do a lot. We do quite a bit. A day could also include me leading a webinar on caregiving, the basics of caregiving or the basics of dementia or just understanding how to cope with being a caregiver.

Q: How do caregiver clients connect with Family Caregiver Alliance to get the help they need?

A: There’s various ways. So most of our clients are referrals. They’re referrals through the many health care agencies out there that you can think of. We may get referrals from palliative care, social workers or hospice. It may come directly from a primary care physician or a neurologist. It could come from someone at one of the many adult day programs. We get quite a few self referrals where people find our information online, or maybe they’ve seen one of our community engagement emails, and then they participate and then we get them coming in that way. Word of mouth, friends and family referrals. We also participate in your traditional community events, fairs, etc. And so, we will get referrals that way too.

Q: The Stanford Center on Longevity reported that family caretakers of those with serious illnesses and ailments have dealt with diminished happiness and heightened rates of anxiety and depression. Have you seen that through your work with FCA?

A: What we’ve seen and what we know is that prolonged caregiving definitely has a negative effect on the emotional and physical health of caregivers. Even though caregiving is generally undertaken willingly, some of us were just thrown into it naturally. But we see chronic stress and we see burnout. With chronic stress, we know that long-term stress can be harmful because it leaves no time for rest and rejuvenation and as a result, it causes health problems as well as burnout. So you’ll see not only increased depression and anxiety, but you’ll see someone who may be having high blood pressure. It can trigger chronic health conditions or it can exasperate them. Someone who was maybe pre-diabetic, now they’re diabetic.

Some people don’t even understand what burnout is. I’ll just say that it’s the result of physical and emotional exhaustion. The symptoms around that are when someone will just become angry quickly or they’re crying easily or overreacting to minor little inconveniences or they’re losing interest in spending time with their friends and or unintentionally gaining or losing weight or the development of new unhealthy coping mechanisms, like maybe drinking or drug use. Aiding the burnout is the caregiver who’s doing multiple roles, especially nowadays. So maybe they’re working full-time or part time or they’re also raising children or they’re volunteering or just have additional commitments. These also increase their stress. We definitely see higher rates of mental health problems. Family caregivers definitely do experience higher rates of depression, stress and other mental health problems.

About 40% to 70% of caregivers actually experienced symptoms of what’s termed clinical depression. We see that about 17% to 35% of our caregivers who are reporting their health as being fair to poor, and this is particularly true for our elderly, spousal caregivers who are experiencing mental or emotional strain. We’ve found that they actually have a 63% higher risk of dying, more than non-caregivers within their age range. Some of this ties into, for aging caregivers, as they get older, family members are leaving or friends are gone. So there’s that isolation and loneliness can be a little bit more prevalent.

The other thing that I will say here is about the physical part of how it affects caregivers. We see there’s like a diminished immune response. So this leads to, believe it or not, caregivers will have more frequent infections and increased risk for cancers. Caregivers have a 20% higher level of stress hormones and a 15% lower level of antibody responses. We know that caregivers also suffer from slower wound healing and also have higher rates of ER visits, believe it or not. So when we look at caregivers, particularly those caring for loved ones that may have Alzheimer’s or some other type of dementia, it’s reported that the caregiving for this particular population impacts a caregiver’s immune system for up to three years after their caregiving experience ends. I found that to be pretty shocking. So the stress hormones, they’re having a lasting impact on caregivers and on their body.

And there’s lower levels of self care. Caregivers will report to us, and it’s been written in literature, that they don’t have time or energy to even take care of themselves, which creates a lot of stress and impacts their health and social engagement, including not being able to go to the doctor’s or to prepare healthy meals for themselves or exercise or even fill their own prescriptions.

When it comes to having a lower income, we see that that leads to more stress. Particularly for older caregivers, for people who make less money and for those who have limited support networks, they report more psychological and emotional and physical health problems than those caregivers who are either younger or make more money and have better support.

We offer support groups through FCA. We also refer individuals for counseling. We will discuss what their overall wellbeing picture looks like, and make some recommendations on how to cope with the stressors that they’re having. So there’s a couple of things that we do there to support caregivers in this area.

Some of it is talking to them about one of the main stressors, which is money. I would say that’s like the main stressor for caregivers. So we will talk to them about the myths around Medicare and Medi-Cal, just because caregivers and many people think that Medicare or Medicaid pays for everything. So we have to kind of walk them down that rabbit hole and explain to them about Medicare and Medicaid. There’s a lot of confusion around the health care system for many of our caregivers, even those who have been caring for five or more years. It’s just very complicated. So we comb through that with them and refer them to other outside agencies that are discussing Medicare, Medi-Cal, spousal impoverishment and support, where that’s their area of expertise. They do that as well.

We talk to caregivers about managing a care recipient who is resistant or angry. We help them understand that care recipients are often struggling over their loss of independence and becoming dependent. In the case of a child caring for a parent, we understand that children just want to make sure their parents are safe. It’s really about just learning the details of the caregivers experience as it pertains to these areas of key stressors for them and combing through and giving them some guidance and tools and coping mechanisms that are particular to their situation.

Q: The Stanford Center on Longevity also said that the majority of family caregivers are women. This can often be tied into the gender pay gap in sociology research. Have you seen that disparity and seen financial hardships at FCA?

A: The real truth to this question is that we are now seeing an FCA has been a rise in male caregivers these days, as well as caregivers that identify as being part of like our LGBTQ+ communities. Both populations are affected by caretaking in different ways.

But when speaking specifically to women, one of the things we see is that women are part of what’s called the sandwich generation—a term in the caregiving world where a woman is caring for both a parent or an aging adult as well as a minor or several minors—and then they’re also working full-time, part-time or maybe not. The impact has been that such caregivers are feeling more isolated and alone. There’s more triggers for them.

Again, we do see a lot of anxiety and depression. This is fueled by such types of caregiving, or just caregiving in general, not even just for women, but for most, if not all, caregivers in some sort of way. I recently had a discussion with a caregiver where they’re making all these like major decisions. The primary caregiver was saying how she’s using up her family medical leave, and she’s being forced to make decisions to end her career early as a result.

Not being able to one balance a career with family caregiving, they had to make a tough decision. Very fortunately for this family, they were financially secure, which is not typical for caregivers. But they’ve pretty much exhausted what they had, and they were new homeowners and all these things. So it’s making those tough decisions on what comes next when you’re caring for someone throughout the course of their lifespan.

The other thing that we have to remember too is that people are living longer and so that’s another caveat. Caregivers are struggling to be financially secure to support their loved one after they’ve made a decision to stay at home. There’s some conversations with caregivers where they were really set on having their loved one stay at home but now, because of the financial component of it, which ties into the stressors and burnout, they’re forced to make decisions where I’ve had caregivers say “Unfortunately it’s a tough decision, but we’re going to have to place our grandmother and we don’t want to do it.” But they have to.

You just hear stories about how caregivers basically use their own retirement to pay for in-home care services. And so you know, the question still remains for us, as family caregiver consultants, how does a caregiver recoup the financial loss for their own future? That’s another issue that we try to muddle through with caregivers, but it’s really hard to and there’s no cookie cutter solution to caregiving. It’s on an individual individual basis.

I will say that the effect can also be positive. I mean, caregiving can be positive and it can prompt an individual or family to take a look at their own long-term care planning, such as getting those important documents like a living will or trust or power of attorneys for their own health and finances completed.

One thing that is common for us at FCA is to ask our caregivers: if something happens to you, then what happens to those receiving care? What has been put in place? Have you had a family discussion? Sometimes a family is just the caregiver and the care recipient and that’s it. And so that’s a harsh reality that is sometimes overlooked by society when it comes to understanding caregiving. We tend to struggle with understanding how it impacts a person’s overall wellbeing, their life and their finances in ways that are unimaginable at times for some of us.

Q: Given your experience as a consultant with FCA, what solutions would you advocate for in the caretaking world?

A: I’ll answer this from a FCA/non-FCA standpoint. So, I hate to say it. I’ll say I’m in my mid 40s.I was born the same year FCA came into place. And I started off as a young caregiver without even knowing that I was a caregiver. My caregiving journey, when I look back, began when I was at the age of 12 or 13. It didn’t start immediately with a parent, but it did start with a family member.

Then, my father, when I was in high school, was showing signs of dementia but I didn’t know what I was doing. I didn’t know I was a caregiver.

So it started off where I had my own car and my dad would call and be like ‘Hey, I don’t have groceries in the house.’ And mind you this was a man who was a very, very prominent figure in the San Francisco community. He owned two businesses. He was well-kept, well-groomed, his house was perfect, in every way a socialite in the community and well-known. And he transitioned into this person who was very disheveled. His health just rapidly declined, and there was a sense of dependency.

I was in high school. I had no idea what dementia is, but I was taking care of taking care of my dad. And it got to the point where, after high school, I was caring for him. I was then in college. My dad’s needs become worse and stronger. His health was declining. He’s almost setting his house on fire. He lit something in the garage. He had frontal temporal dementia, which is one of our more aggressive types of dementia. He was aggressive with people he used to like so, in a long story short, I ended up dropping out of college. I ended up quitting the job that I had, and I ended up becoming his full-time caregiver.

And just like the majority of caregivers, I just segued into it naturally. I ended up taking care of him full time, 24 hours a day. I didn’t have what we call respite. I didn’t know what that was because I didn’t know how to ask for help. Family members weren’t leaning towards offering to help. So this is you know, this is your atypical story. Financially it was a struggle for me. I was relying on the financial support of my mother, who was no longer in a relationship with my dad, but she was supporting me as well as my sister. And I went through this whole experience.

Knowing what I went through personally, it mirrors a lot of what caregivers to this day still go through. You can be anywhere on the spectrum of finances. I mean, I’m speaking to caregivers who make six figures or more, and I’m speaking to caregivers who are facing poverty. So it doesn’t matter, but there’s just never enough financial resources to support caregivers caring for loved ones, family, friends, whoever it may be. There also isn’t enough, when we look at policies, in place to protect caregivers financially. People are struggling no matter where they fit on the income spectrum.

Awareness. I think that we need more awareness about the inequalities that exist within caregiving and how it relates to the health care system and the impact of inequalities on caregivers from certain diverse backgrounds. I see that too and think that that’s another topic that’s underground and should be brought to light too. There’s a lot of communities, minority communities in particular, that are suffering. They’re not getting the support.

Then obviously, the other part that needs more attention is the mental health side of caregiving. There’s an assessment tool that’s there to assess for suicidal ideation. And I do get caregivers who will say ‘Yeah, I feel suicidal, I am burnt out, I’m tired. I feel like I don’t have anywhere to go.’ So then we are walking through this suicidal assessment to obviously make sure that they’re safe and if they’re not, we have protocols. But it’s just just the fact that these you know, 45, 50, 60, 70 years later, these are the issues that are still coming up for caregivers and care recipients. What impacts caregivers, it’s also impacting care recipients.

Q: Is there anything else you want to add?

I think it’s good to end on a note of the positives of caregiving. Obviously there’s a lot to caregiving, but it can bring a higher level of compassion and empathy and appreciation. It can include improved relationships with the care recipient. Caregivers end up with a wider skill set. There’s trainings on tasks that help caregivers feel like they’re gaining a new skill or making a difference. For some caregivers there’s this sense of making a positive contribution. So it can really add meaning to a person’s life. And lastly, we know that caregiving prevents institutionalization, so the care people receive at home undoubtedly does keep them from being placed in a facility prematurely, or at all. So it can allow a person to live their life completely at home. And that’s it.