Annc: This Studio Sacramento episode is supported by UC Davis Health where doctors, nurses, and researchers share a passion for advancing health.

Learn more about their latest medical innovations at health.ucdavis.edu.

♪♪ Scott: The rising number of seniors has been called a Silver Tsunami that is impacting a growing number of families caring for their aged loved ones.

The UC Davis School of Nursing's Family Caregiving Institute provides support and training that can be a lifeline to caregivers.

Executive Director, Terri Harvath, and family caregiver, Nancy Pennebaker, join us today to talk about caregiving and getting the support our loved ones need.

Nancy, tell us how you came to be a caregiver.

Nancy: Well, my husband and I were enjoying our retirement life, and, uh, it became apparent that his memory wasn't as good as it used to be.

And my family, uh, and I decided we ought to, uh, get my husband tested.

So, uh, it was several years ago that he was diagnosed with cognitive dysfunction and from there we, um, decided to move from a rural area, closer to medical care and near our, um, our family.

Um, it, uh, started on a kind of slow, um, uh, beginning and then it... it, uh, kind of took over.

And I said to my daughter the other day that I'm no longer retired.

I didn't realize it, but I now am a full -time employee.

And it is very time consuming.

Scott: You know, when you talk about how you've gone from retiree back to a full-time job, can you, uh, share with us further, how did your husband's condition and the change in your life impact, just, you know, your day to day?

Nancy: Wow.

That's a... that's a big question.

It, um, it impacts everything.

I know that, um, when I heard the diagnosis and began to understand what the impact was, it was very alarming and sad to me because I realized it was, uh, the end of the marriage that I knew we had for 40 years.

And, um, it, uh... Scott: Nancy?

Nancy: It was a-- Scott: Nancy, I'm going to ask you-- Nancy: Yeah?

Scott: or just one second.

That's an incredibly powerful statement that it was the end of the marriage that you'd had for-- Nancy: Yes.

Scott: 40 years?

Nancy: 40 years.

Scott: 40 years.

Nancy: Yeah.

Scott: Tell us exactly what you mean by that.

Nancy: Well, uh, what I mean, uh, and what is hard to explain to someone like a good friend, um, what it... what it actually means and the significance of it is, I no longer have a partner that I can talk with that I can, uh, run ideas by to help me make decisions or to get, uh, decisions in agreement with, um, my husband.

We had a... a wonderful marriage and we were very collaborative, uh, and strong partners.

And it meant the whole day and our whole life, uh, was completely different and... and going away from what I knew.

So, the... the, um, future was very unknown, and it was very, as I said, alarming.

I...

I really didn't know what to do, um, other than I just knew that I wanted to take good care of him and, uh, to make the, uh, time that we had together, as best as I could.

Scott: Terri, when you hear Nancy's words, in there you hear loss, uncertainty, um, a lot about the unknown.

As a... as a practitioner, who has worked in this field for a very long time yourself, how unique is her experience with regards to this and with regards to how the others, the families that you see are going through as well?

Terri: Thanks, Scott.

Unfortunately, it's a really common experience that Nancy and other caregivers have, particularly when they are caring for somebody who has dementia or other forms of cognitive impairment.

Because what happens is that the disease starts to rob that person of their personality, of who they had once been.

Their memory is impaired, their ability to understand the continuity of their lives together is interrupted.

And so, we often, um, talk about that in the context of dementia, family caregivers experience pre-death grief, because even though her husband is there, um, she's losing part of her relationship with him.

She's losing him.

And that represents a significant loss.

Scott: Is that always appreciated by the family members, friends, and community that surround people like Nancy and her husband?

Is it appreciated in a way-- in the way it should be?

Terri: I think it often is not, um, in part because Nancy and other caregivers do a really good job of protecting the person they're caring for from the loss of dignity that... that their impairments, uh, result in.

And so she is, and Nancy and I have talked about this, she, you know, sort of covers for him and protects him so that friends and neighbors and other family members are not as keyed into the full extent of his cognitive impairment.

Um, and I...

I think it's also, when you live with someone on a day-to-day basis, you really see the small changes that add up over time.

And so, um, you know, until you experience it yourself, I think it's really hard to fully appreciate just how devastating the loss is and how, um, significant and extensive that loss is.

Nancy: You know, Terri, that is just so true.

I, um, when it first happened to me, I have a lot of close friends that I'm very close with and my family, and I completely expected them to react as I had reacted, a death.

And, um, it was-- it's just not understood unless you go through it.

It's a very significant change.

And it's, uh, because it's, uh, not recognized, uh, in the degree of... of its significance.

You-- it's another problem with your isolation and your... and your feeling loss.

You lose your sounding boards.

You lose... you... you lose a connection cause it changes relationships.

Scott: Does it... does it ever leave-- Terri: And it'’s not unusual-- Scott: Oh, please go ahead.

Go ahead.

Terri: Well, I was going to say, it's not unusual with dementia for the person's social skills to remain intact and that can cover a whole host of impairment because the person is able to respond, picking up cues.

I think there must be some survival, uh, benefit from that where you don't look like you are as impaired as you are because you managed to pass in particularly, you know, fleeting social interactions.

And so, um, unless you have greater depth of contact with that person, you may not really be exposed to the full extent of their deficits.

Scott: When you'’re talking about-- Nancy: You know that is-- Scott: Uh, when you're talking about, uh, Nancy, how it is that, you know, those around you are... are receiving you, is there any sort of lack of understanding, or even resentment that happens because they expect you to be available in the same way?

To, uh, essentially have the same sort of lifestyle or pacing in terms of the activities you're involved with.

That sort of thing?

And that-- Nancy: You know-- Scott: Leads to issues?

Nancy: That's exactly what I was going to say.

That it reminded me, um, that number one, uh, one-- a response that was very troubling to me was that I had people that wouldn't believe me.

That they would say, "Oh, I just saw your husband.

There's not anything wrong."

You know, I'm-- you know, "What are you talking about?"

Which was just devastating to me because it made me feel, first of all, am I imagining this?

I know I'm not, it's, you know, there on the paper.

Um, but it's-- there is a lot of resentment because, um, and frustration.

In essence, it's not being listened to, and it does, it... it... it does cause some... some anger and some guilt in maybe... maybe I shouldn't have said that, you know?

Maybe, you know, maybe I'm... it's like gossiping or something because, um, social skills are... are hard to pick up on unless you're with someone all the time.

You don't notice memory loss and things like that unless you're living with someone, at least in the beginning.

Scott: Terri, I wanted to ask you, there is what I referred to a... a little bit earlier to the Silver Tsunami.

Give us a sense of the depth and breadth of what we as a society are facing with regards to the demographic changing, leading to more and more family caregiving.

Terri: Mmh.

Yeah, it... it's unprecedented in history, really what's happening demographically in this country, but really across the world.

Um, we're seeing in this country, 10,000 people turn 65 every day.

This has been going on for over a decade and will continue for two more decades.

And it's... it's unfathomable.

And it's not just that we have unprecedented numbers of older adults, at the same time, the number of younger adults is decreasing in proportion to the older adults.

And so, what that has resulted is, uh, an increased likelihood that most of us will be involved in caregiving for an aging family member at some point in time, over the course of our lives.

Scott: Give us a sense of that decrease that's happened over the years in terms of how many uh... uh, aged people are alive compared to the number of people that are younger that can care for them.

Terri: Yeah.

Basically in 1950 you had a 3% chance of being a family caregiver.

So, um, for every, uh, 100 people who were the age of caregiving, there were three people who, you know, needed help.

By 2030, that's going to go up to 30%.

So, we'll have a 30% chance of being a caregiver.

Scott: Wow.

Terri: And, um, we're looking at even currently 50% of households are involved in caregiving in some way.

So, you may not be the primary caregiver, but you may have someone in your family who's assisting, uh, an older relative, um, in some other supportive way.

So, it's become this normative event for adults to be engaged in caregiving.

And it's one that we, um, don't really prepare ourselves for.

And we don't do a good job of preparing caregivers for the role that they've been called to do.

Scott: Nancy, you know, based on Terri's words, it sounds like that you are a part of a growing community and at the same time, very much alone.

Nancy: Mhm.

Yes... yes.

I, um... it'’s a very odd kind of environment because I'm very much alone and yet I'm very needed all the time.

So, I don't really have time to think things through until maybe the middle of the night when you wake up and you start to worry.

Um, I think the fact that it's very difficult to understand the impact on a caregiver.

Um, it there's so much attention obviously, and rightfully on the... the one who is ill because other people are going through a little bit of.... of... of understanding their friend or their father or their grandfather is changing.

Um, but I think as a caregiver, the needs are really, uh, significant and it makes a big difference if you have just anyone who understands and who can provide help and actually, uh, be a cheerleader.

That's the thing, Terri is just amazing and has literally changed my life in the sense that she's my cheerleader.

She, um, really encourages me, you know.

I'm...

I'm... for once my needs are very important, because if I don't take care of myself, which is a common thing for people to say, you can't take care of the person that you want.

You can't be a mom, or a wife, or a sister unless you, yourself, me, um, is rested and feels, um, feels that, um, just normal, everyday kinds of things that you used to need can still happen.

Scott: What... what has the Family Caregiving Institute meant to you Terri?

Terri: It's meant-- Nancy: To me, what has it meant?

Oh, my goodness... Scott: I mean, Nancy, I...

I apologize.

Terri: Go ahead.

Nancy: Oh.

Scott: What has it-- so, yeah what has it... what has it meant to you?

Nancy: It's meant everything.

I, um, so I spent a good two-and-a-half years struggling on my own.

Um, and I, uh, was having trouble in the medical community getting, uh, understanding, even for my husband, and the coordination between doctors and, uh, pharmacies and everything just, it was a mess.

So, not only was I dealing with what the needs were daily for my husband, but it was always a catastrophe that I had to fix that just wasn't working.

And so, um, someone recommended this "new" program and, um, I really, I went into, um, the... the center with my husband basically to find some place where one person could take care of him.

And then from there coordinate that stuff that he needed because there was no coordination.

And that was beyond what I could do.

And so, I went in, and it was amazing.

And the, uh, his, uh, gerontologist is, um, a wonderful person at the center.

And she began taking care of my husband and bringing in all the different things that were needed.

And mistakes were not happening anymore with the pharmacy and that kind of stuff.

But she-- I think it was the second... second time I was there, uh, doctor Tuqan said, "What about you?"

And I-- she said, "I think I know, um, kind of some things that you might need, and I have the perfect person here at the Institute," um, "and are... are you willing to talk about it?"

And oh, my goodness.

My first meeting, I...

I have to say I was exhilarated.

I walked out of the center exhilarated because I saw that on a daily basis, there were, uh, very professional people that could take care of my husband and his needs, but then there was also so much support for me.

And I realized that, um, what I'm in now is an experience that I can enjoy and welcome because I can...

I can learn so much.

And I have to tell you, things I've tried to work on because of who I am my whole life, I figured out and I can handle now because they pop up with, uh, taking care of my husband.

And so, you know, I figure out how am I going to help him and then I go, "“Oh!

I could do this in my whole life.

Not just with my husband.

"” Scott: That... that is wonderful.

Nancy: So, I'm learning so much!

Scott: That is wonderful to hear.

Nancy: Yeah.

Scott: And Terri, I want to ask you, you know, Nancy's experience sounds wonderful.

Give us a sense of the full range of support services that the Institute provides.

Terri: So, this is a new area for us that has, uh, started just in, um, January with UC Davis Health's new Healthy Aging Initiative.

Uh, we opened, uh, a new clinic to focus on the care needs of older adults, particularly older adults with dementia.

And, um, I knew right away when I started working on this initiative, it was an opportunity for us to provide direct care services to family caregivers as well.

And so, um, right now I'm seeing caregivers one day a week in clinic to understand what their concerns are, try to connect them to resources that they, um, may need.

We're looking at developing support groups, uh, when we, uh, go down the line.

We also, um, are hoping to be able to develop some classes that we can offer to family caregivers to learn how to do some of the challenging care activities that I went to nursing school to learn how to, you know, manage.

So, incontinence, dressing changes, injections.

We ask families to do all of these complex care tasks, but we don't do a very good job of giving them the instruction and the support they need to develop comfort in performing these complex care tasks.

And so, this is an area that we hope to be able to expand over time.

One of our nurse practitioners is going to be joining-- Scott: You... you have been working in this field for over 40 years or so?

Terri: Yeah.

Scott: Over 40 years or so.

How have the needs of the aged and their caregivers changed over time?

Terri: I think that we are doing a little bit better job now in recognizing the important role that family caregivers play in our healthcare system.

Um, I...

I still think of them as the invisible member of the healthcare team, because we often don't value what they know and can tell us and the role they play in enacting any of the care plans or treatment plans that we develop for older adults.

Um, I had an opportunity to experience that on a very personal basis, uh, at the beginning of the pandemic.

Um, my partner was in the hospital for the full month of March, um, with complications from cancer.

And when the pandemic-- this was March of 2020-- and when the pandemic struck, hospitals across the world banned visitors, but made exceptions for parents of minor children and partners of pregnant women.

Because we understand that parents are integral to care of children, and partners for pregnant women.

But no such exception was made for family caregivers for frail older adults or older adults with cognitive impairment, who also whose wellbeing depends often on having a caregiver there.

And, you know, I got kicked out of the hospital for about 18 hours until I was able to pull strings and, uh, claw my way back in.

Um, but it-- I was, uh, an exception.

Um, and let me just say, this was not at UC Davis, uh, Medical Center.

Um, but it really affirmed for me just how invisible and how, um, we are dismissive of the role that caregivers play.

And even though we're-- we now are recognizing that we rely on them, we don't always have the right, um, skills in partnering with them the way that I think it would most benefit them and the older adult they provide care for.

Scott: How does one-- who and... and how do you access the services of the Institute?

Terri: Right now, we're still in startup phase and so we are taking, uh, referrals from patients who are already connected to UC Davis Health.

And so, if you have a primary care provider within the UC Davis system, um, ask them to make a referral and we will get you on the schedule.

And, um, I'm hoping that we will see a large increase in demand for this so that we can continue to grow these services.

Because I think that they, um, have the opportunity to play a valuable role in supporting caregivers.

Um, you know, Nancy is, uh, remarkable in her resilience and her capacity to, um, use the coaching in the discussions that we have and put them immediately into, um, operation in caring for her husband.

Other caregivers have, um, have struggled with that.

Um, you know, I'm always humbled when I meet with caregivers to understand all ma-- all the complex demands that they are managing.

And that has been so much worse during the pandemic as they've had children at home they've tried to, um, also be involved in education-- educating them, services dried up, so they didn't have any kind of respite or help.

Um, and I think it really highlighted just how fragile our healthcare system is in managing and responding to the needs that older adults and their caregivers have.

Scott: Nancy, in our final moments can you share with the people who might be watching this conversation and are still shy about reaching out for help, what... something, anything that might help them reach out and connect with the help that could have-- that could impact their lives, the way that, uh, Terri and the resources of the Institute have impacted yours?

Nancy: I think-- Scott: Very quickly.

Very quickly.

Nancy: Yeah.

I...

I...

I think it is difficult to quote, "ask for help."

I kind of fell into it.

But I-- my... my suggestion is there's so much out there that is positive and pleasant and good for you as a caregiver.

And if you can find, um, a person to counsel with like, like Terri and a program that the University of California have, it will make a huge difference in terms of the time you're spending on this journey with the person you're caring about so much.

Scott: And I think we'll leave it there.

Nancy: Okay.

Scott: Thank you both for sharing your stories and your work, uh, with all of us.

Terri: Thank you, Scott.

Nancy: Well, thank you.

Scott: And that's our show.

Thanks to our guests and thanks to you for watching Studio Sacramento.

I'm Scott Syphax.

See you next time right here on KVIE.

♪♪ ♪♪ Scott Syphax: All episodes of Studio Sacramento, along with other KVIE programs, are available to watch online at kvie.org/video.

Annc: This Studio Sacramento episode is supported by UC Davis Health where doctors, nurses, and researchers share a passion for advancing health.

Learn more about their latest medical innovations at health.ucdavis.edu.