Virginia and Steve are joined by Linda Abbit, an eldercare professional and caregiver with over 25 years of experience in dementia caregiving. She has authored a book called, The Conscious Caregiver: A Mindful Approach to Caring For Your Loved One Without Losing Yourself (Simon and Schuster, 2017).
In this episode, the trio discuss the importance of prioritizing self-care for the caregiver, tapping in to mindfulness, how to identify burn-out, and utilizing respite care. To learn more about Linda's work visit her Facebook page at: https://www.facebook.com/TenderLovingEldercare/
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Steve O'Leary 0:06
From the University of California, Irvine, this is UCI MIND’s Spotlight on Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's, and other dementias.
Virginia Naeve 0:23
Hello, and welcome to Spotlight on Care. I'm Virginia Naeve, and I'm here with my cohost, Steve O'Leary. Today, our subject is keeping caregiver sanity, how to avoid stress and burnout. Our guest will help us know how to become what she calls a conscious caregiver. Before we get started, I know that this subject is near and dear to Steve's heart, because he has a men’s support group and I think they talk about the subject a lot. So Steve, do you want to say something about caregiver stress and burnout?
Steve O'Leary 1:05
Sure, I was going to talk a little bit about the value of groups and the group therapy and even though it may sound or feel intimidating, to get together, either with a bunch of other guys who are dealing with wives with a memory issue, or even with young adults, it is a very powerful opportunity for you to share. And you can build up a lot of stress in your system, if you don't have an outlet with which to talk to. So it's one powerful way to do it. I know that Linda will talk about some others. And I would urge you to join a group, it just, it sounds like it's going to be intimidating and it is a little bit to begin with, but it really isn't long term. And you will build friendships that will carry you through this process.
Virginia Naeve 1:54
Steve, do you find that you need to kind of coax a man to join a support group? It seems to me women are a little bit more amenable to the idea of joining a support group and men. Is that true or not true?
Steve O'Leary 2:08
Yes, I think that's true. I've had several people call and ask about it. And we talk about it and then they decide that they're not going to participate. And I often say to them, well, that's fine. Give me a call when you feel the need. You know, you can mentor one on one if you need to, but there's something way more powerful when you're listening to somebody who's been where you've been. It's not always the same, every journey is different. But you know, some of the roads on the journey are similar, and it's very valuable to hear that conversation. And the other thing I was and-I think Linda is going to talk a lot about it-, but I just wanted to say, hey, don't be afraid to ask for help wherever you can get it. I think that's the overarching theme. It could be your minister, your priest, it could be a close friend, it could be a lot of resources. You need to have help. And so that would be probably the byword that I was very fortunate to have lots of help.
Virginia Naeve 3:08
That's nice. Yeah, you need help in these situations. Thank you. In looking back in my own situation, while caring for my mom who had Alzheimer's, I think I did realize that if I was getting frustrated, I knew I needed to take a break. There were times I thought “I need to go do this, do that”, and I would think to myself,” I just can't, I need to stop”. And I would define that as bumping into a caregiver wall. There would be a problem. I would fix the problem, hopefully and then I knew somehow, someway there was going to be another wall that would be hitting. So, you know, you just do your best. Anyway, today's guest is Linda Abbit. She is an elder care professional, with more than 25 years of experience caring for her parents and other family members. She's the author of a book called The Conscious Caregiver: A Mindful Approach to Caring For Your Loved One Without Losing Yourself. She recently retired from her position as a community outreach manager for the Alzheimer's Family Center in Huntington Beach, California. She also has an active Facebook page called Tender Loving Eldercare. Welcome Linda, we're glad you're here with us today.
Linda Abbit 4:41
Thank you, Virginia and Steve for inviting me to be on your podcast. I'm delighted to be here speaking with you.
Virginia Naeve 4:48
Yeah, we're glad
Linda Abbit 4:51
I have to second everything Steve said. I'm a huge proponent of support groups. I immediately joined one when I found out my mom had Alzheimer's disease, and it’s one of the best resources a caregiver can find, I think.
Virginia Naeve 5:10
Yeah, I think a lot of times people feel like they're alone, but they're not alone. In fact, that leads me into what I was just going to say. I recently read there are 16 million people in the United States, acting as a caregiver for someone with Alzheimer's or other dementia. That's a lot of caregivers. So Linda, tell us how you got involved in the world of caregiving and what your personal journey was.
Linda Abbit 5:38
In 1998, not that long ago, I received a phone call from my dad that changed my life, both personally and professionally. He said, “Linda, the doctor says mom has Alzheimer's disease, but don't tell anybody”. I share that because it shows how far we've come. The stigma around Alzheimer's and dementia has decreased immensely, and people no longer need to feel ashamed or embarrassed if they or a loved one are experiencing memory loss. And brain diseases being researched and being spoken about obviously-due to and thanks to this podcast- quite openly now.
Virginia Naeve 6:26
There’s a lot out there now. There's a lot of information out there now that there wasn't at that time.
Linda Abbit 6:31
And resources as well. Well, we're fortunate where we live, that we live in such a wonderful community that has so many resources for people struggling with this disease and their families. So after that phone call overnight, I became a long distance caregiver because they were living in Florida at the time. And we have noticed signs of memory loss with my mom. But at the time of her formal diagnosis, she was 89. My dad was 92. And they'd been married for 69 years.
Steve O'Leary 7:05
Linda Abbit 7:07
And I was younger than most caregivers, most of the children of people that age from like in their 60s. Like now my friends are all going through their caregiving journey. I was ahead of the curve because my parents were old enough to be my grandparents. Technically, because I was adopted. That's another long story. Actually, I was a backup caregiver. I would fly to Florida to visit and support my dad in his role as primary caregiver. And I also was the sandwich generation caregiver because our son was nine years old at the time of her diagnosis.
Virginia Naeve 7:45
So when would your dad call you and tell you what was going on?
Linda Abbit 7:50
That was all we had in those days was phone calls. We couldn't Zoom or FaceTime or anything. I urged him to try to find support there and there was family there but they were also all elderly and dealing with their own health concerns and families. So eventually, as my mom declined, he realized he needed more help. And they didn't move out here for the last several years. He literally stayed by her side through all of the stages. And at first they lived in an assisted living community and then they had to move to a boarding care.
Virginia Naeve 8:25
Linda Abbit 8:26
Unfortunately, like many caregivers, my dad died first in 2005 at age 98. And my mom died in 2009, two months shy of her 100th birthday.
Virginia Naeve 8:37
Linda Abbit 8:39
So all that was going on. I was also part of a caregiving team of cousins, cross country, who cared for my Aunt Rose, who lived in Manhattan and was a widow and had no children. So I've been through a lot of different experiences as a caregiver.
Virginia Naeve 9:00
Oh my goodness, all that on your plate at once. So, okay, so tell us, what is a conscious caregiver?
Linda Abbit 9:14
A conscious caregiver is a caregiver who chooses to allot time, energy and compassion to themselves as well as their care recipient. That's one of the most important lessons I've learned, that it's vital for caregivers to practice self-care. And my little motto that I like to say is, “Self-care is not selfish.”
Steve O’Leary 9:38
That's a great line.
Linda Abbit 9:40
Quality of caregiving improves when the caregiver takes care of themselves. And improves for them and improves for their care recipient and loved ones.
Virginia Naeve 9:50
Yeah, you can't take care of someone else unless you're in the shape to do so. Talk to us about the role, the role confusion, changing of roles.
Linda Abbit 10:02
Yes, that happens because as things change, you and your loved one feel uncertain about how to relate to and interact with one another. For example, do you still feel like their spouse? Or do you feel like now you're their parent? That's very heartbreaking for a spouse to go through. I saw it with my dad, and I hear about it all the time. It's hard to separate your new role as caregiver from your old roles. I mean, you've been a parent or a child for 50 years. And so it's hard for both parties.
Virginia Naeve 10:40
I think I found that the toughest part, my mom was you know, I went to her for things, she would give me advice, and then all of a sudden, I'm acting like a parent almost to her. And it took me a while to get used to that whole concept.
Linda Abbit 10:59
Well, caregiving for a parent is often called role reversal, but I prefer role confusion, because it's not a true reversal. You can't erase all those years that you spend as a child and a parent. They can't either. But um, and also you don't have that legal responsibility that you do for your children.
Virginia Naeve 11:19
Linda Abbit 11:20
You can't tell your parent what to do, unless they reach the point where they're so declined, and you have power of attorney. And that also brings up the point that you should allow your parent to participate in their care plan and end of life decisions and wishes until they are no longer cognitively able to, or if safety is a concern.
Virginia Naeve 11:41
Right? Right, we just
Linda Abbit 11:43
Very easy for us to charge in and try to take over. But that's not the best approach for sure.
Virginia Naeve 11:49
It's a difficult approach. They're not used to having you do that either.
Linda Abbit 11:53
Right. And they don't like it usually, especially initially, they're dealing with the loss of independence, mobility, energy, strength, and then to have their child start telling them what to do isn't always that pleasant an experience.
Virginia Naeve 12:09
It's just odd. And oftentimes, unpleasant. I was lucky mom was very cooperative about that, but I know friends have gone through their parent not being cooperative about that- didn't want to give up any sort of control, even though they kind of knew they were losing it.
Linda Abbit 12:26
Steve O’Leary 12:28
What advice do you have, Linda, about denial where a parent or a loved one, your wife or your husband is in denial about the disease, and you're trying to convince them with the fact that they need help? And we need help? How would you? How do you deal with that stress?
Linda Abbit 12:47
I would suggest baby steps, not try to do a big change all at once but broach the topic. It might take several conversations over time. And also, like you mentioned, a circle of support. If you had created that with your siblings, neighbors, friends, whoever is in part of your circle of support, maybe they can broach the subject and get the conversation started. You're not going to be able to just convince them overnight.
Steve O’Leary 13:18
Well, you know, I found that I started to try and in the beginning, you could use some rational discussion. As the disease progressed, that became impossible. But in the beginning, it was like, “okay, we're going to be able to do a better job of caring for you if you acknowledge that you have an illness”. And you know, that's where the doctor became very helpful. And, you know, it's like, well, the doctor said this, and the doctor said that even if they didn't all the time, I would use that as the rationale.
Linda Abbit 13:53
That's great advice. I've done that myself. And I've told other people to use the doctor, so that you're not the bad guy. You don't want to be the bad guy.
Virginia Naeve 14:03
I think Steve's wife, Patty, was really cooperative about that. She really did buy into that concept of letting the doctor kind of steer the direction. In the media these days, we hear a lot about mindfulness. What is mindfulness and how can it be applied to caregiving?
Linda Abbit 14:21
Mindfulness is the ancient art of practicing self-awareness in the moment, without judging. It means pausing in the midst of any situation, caregiving or not, and taking time to pay attention to yourself, your environment, the other people around you, and then pausing, reflecting on what's going on without judging yourself or others, which is the hardest part usually, and only then acting or responding to the situation. And this could take place in a manner of minutes or over a longer period of time. In terms of using it and caregiving, the two most important things I think mindfulness is good for is communicating and thinking. Through clear and open communication, you can again improve the quality of caregiving, and relationships with not only your care recipient, but with other family members or people in your circle of support, and also medical professionals you're dealing with, like doctors or other paid caregivers.
Virginia Naeve 15:31
Okay, without judgment.
Linda Abbit 15:34
We all have a brain thing going on all the time criticizing ourselves, at least I know I do.
Virginia Naeve 15:40
Yeah, I think they call that self-talk.
Linda Abbit 15:43
Mm hmm. Yeah. That’s the hard part to shut off.
Virginia Naeve 15:47
Yes, it is. It is. And I find myself sometimes saying, “ugh, stop”.
Linda Abbit 15:54
Do you experience that too? Or did you?
Steve O'Leary 15:57
Yeah, I think that's very difficult. I think it's particularly difficult for men, in that they've all, not all, been taught, but often come away with this idea that you can solve any problem. And so you're always looking for solutions. And you're trying to take control of the situation, so you can find a solution, when in fact, you know, you're much better off finding resources to use for that purpose. But realizing that you can't control and, you can't change the conversation with your loved one. You have to follow the lead that they're providing. And so that takes some real adjustment.
Linda Abbit 16:40
A very wise support group leader, as a matter of fact, taught me the sentence which I held on to and used and still think of today. I made the best decision that I could with the information I had at the time. So I try to even in my everyday life, I use that even though I'm not a caregiver per se any longer.
Virginia Naeve 16:59
I look back and I think, “Oh, I should have handled that differently”.
Linda Abbit 17:02
Me too. I have regrets. I wish I had handled things differently with my parents, but I did the best I could. Because I didn’t know as much as I know now. And the resources aren’t there.
Virginia Naeve 17:14
No, there wasn't the information out there before. But there's a lot of help out there now. And there's a lot of information. And I feel like I would have been better now than I was starting in 2005. The year your dad passed away is when my dad passed away and mom's Alzheimer’s got kicked into gear. There's a concept of self-care. And we also hear a lot about that. We hear a lot about mindfulness, and we hear about self-care. Your book was so good when it talked about working that into a daily routine. Tell everybody how you do that.
Linda Abbit 17:52
I started by creating what I call a happiness list. And list then is an acronym. L is for likes, I is for interests. And S and T stand for satisfying things. And what I suggest caregivers do is literally write down the things that bring you joy or fulfillment, either from things you're doing currently, your past or even your childhood. You want to write down those things that you lose time, lose track of time when you're doing. And then I suggest that again, baby steps, give yourself five or 10 minutes every day, pick one of these activities and spend time doing them. And then I guarantee because the five or 10-minute break will then expand into longer time. And you will find ways to, I call it pampering yourself.
Virginia Naeve 18:49
Yeah, it gets to be a habit.
Linda Abbit 18:50
Yes, exactly. And each person's list will be unique because we're all different. And your activity might have to be altered slightly depending on the day or what your care situation is, but I still believe it can be done if you start with baby steps.
Virginia Naeve 19:08
Yeah. And of course, there are health benefits. If the caregivers' health goes south, you’re in real trouble.
Linda Abbit 19:19
Yeah, I mean, self-care will improve your physical health, obviously your mental health. You'll feel less frustration, guilt, anxiety, you'll probably sleep better, and hopefully you'll have a better self-esteem, feeling better about yourself in general, if you're doing things you like.
Virginia Naeve 19:37
Exactly. People forget to do that when they're being a caregiver. But it's really important.
Steve O'Leary 19:44
Linda, would you suggest any specific, I love that, this idea of tapping back into what makes you happy. But we've also seen in our group, some discussion about breaks, you know that, especially in the phases, when you're providing all the care yourself at home before you have help, that you need these mental breaks, and it could be, and that's one of the reasons you get started with in home care. But we often talk about two breaks. One, some sort of break for an hour at a time during the early phases, and then also a longer break, you know, once you're, you may need a trip, you may need a visit. You may have another family member come in and actually take care of them for a period of two or three days so that you get a longer break. Because it can just spin you down because it just, the demands, mental demands are tough.
Linda Abbit 20:48
Yeah, I totally agree. Really important.
Virginia Naeve 20:51
And very important. And it's hard for a lot of people to accept help. It's offered, but they think, “oh, I'm imposing”, you know, “I can do this”. But it's really important to realize that you need that break.
Linda Abbit 21:06
Caregivers often have a blind spot when it comes to recognizing that they need help, and then accepting help, both. And they also feel that asking for help is a sign of weakness or failure, whereas self as accepting help is actually a sign of self-knowledge and wisdom.
Virginia Naeve 21:28
Absolutely. And that kind of leads me into the next topic that we want to talk about, which is burnout. It's a common thing to hear people say, “oh, I'm so burned out”. But that doesn't quite describe the burnout of a caregiver. How do you know what that burnout is-what you are experiencing?
Linda Abbit 21:56
A caregiver could be experiencing exhaustion- physically, emotionally, or mentally. And in my book, there's a long list of signs but a few.. oh, and the other thing is that they also might notice a change in their attitude to be more negative or apathetic towards their loved one.
Virginia Naeve 22:16
Linda Abbit 22:18
Yeah. Signs would be, has your sleep patterns changed? Do you feel more worried or anxious? Are you constantly irritated? Are things upsetting you that didn't upset you before? And do you find yourself speaking sharply to your loved one or care recipient? Are you having a hard time getting through the day?
Virginia Naeve 22:42
Yeah, so what are you supposed to do?
Linda Abbit 22:46
Don't get to that point.
Virginia Naeve 22:49
It's a good idea.
Linda Abbit 22:50
That circle. Create that circle of support. Steve, I know what I was thinking of before you mentioned in-laws. Oftentimes, a son-in-law can fill in for you when needed if you feel like you need a break. Like you were saying sometimes you just need an hour or a weekend and oftentimes, but older adults will have a great relationship with their son-in-law or daughter-in-law simply because it's not their child. And they'll be happy to accept help from them sooner than they will their own children.
Steve O'Leary 23:27
It has another benefit too, at least it did for me. As well as we communicated to my kids what was going on, you can't really experience it until you've lived it and as a caregiver, and when my son Mark took over for me for a weekend, I mean his reaction was he was just astounded about how difficult it was, how time consuming it was, how stressful it was and you know not that anybody needed any reinforcement I guess but I think it helped everybody understand a little bit more what it was like. And that's sometimes helpful in terms of family communication too, so I think your suggestion is a great one. Find a family member if you can. It can work to your benefit because all they see is the outside you know, “oh gee we went to dinner and she seemed or he seemed fine”. Yeah, well, that's only one piece of the equation.
Virginia Naeve 24:26
Absolutely true. Accepting help. delegating. What about respite care? What do you.. what can you tell us about daycare, either at home or out of the home, respite care?
Linda Abbit 24:44
Well there, luckily we live in an area where there's a lot of both, daytime places you could bring your loved one for a break or overnight. A lot of the assisted living facilities have a memory care unit. And I believe most of them, it's hard now with COVID so I don't know what the rules are, but they often offer respite care, so that the caregivers can get a break for a weekend or a week. And I know that that used to be available. And I'm hoping it is again now.
Virginia Naeve 25:19
I just went into one the other day that's not too far from my home. And I was going to ask them how it was going. And he said, by the way, in a month and a half, we're closing. And I said, “Oh, that's awful.” And he said, “COVID, the timing was just terrible.” Yeah, it's very disappointing. Because just, I remember thinking back. Well, I had a lot of help. Mom was in a facility after a while, but when she wasn't, I remember thinking, “How do I even go get my haircut? I need an hour, I need two hours. I need more than that.” And you just have to find a way to do it. Any more questions you have for Linda, Steve, before we wrap up?
Steve O'Leary 26:06
Well, I think this respite is a great word. Because I think that's what the concept is, whether it's, you know, an hour or a day or a weekend. And I think that this whole idea of your. I'd love to hear you talk a little bit more about conscious because it's, you know, when I first heard the word I thought, conscious unconscious. And sometimes when you go through this process, you feel unconscious, like it's running away from you. And when I heard the word conscious, it made me think about you're better prepared, you understand what's happening. Is that your take on it in terms of what, what's the ultimate goal for you as a caregiver to try and accomplish?
Linda Abbit 26:54
Well, when you're being a conscious caregiver, you're making choices, to be more mindful. And be more aware of yourself. So you do, right from the get go, you're giving yourself more time and more compassion, you're being easier on yourself and just by that attitude shift, you approach things differently.
Steve O'Leary 27:23
Yeah, that's definitely the case. I'll never forget visiting a couple of very close friends of ours. And both of them, after seeing the two of us interact, took me aside and said, “Boy, you've really changed.” and I'm going, “What?” And I took it, you know what, “Yeah, I'm not changed, you know, I'm still the guy I was before.” And the reality was, I had learned, in their opinion, a level of patience that I had never shown before, and which was a nice compliment. So you know, I think that that is the process that you go through. And if it's possible to look at things that occur in your life, as a result of this journey, you can come out the other side a better person, at least I felt like I did.
Virginia Naeve 28:12
I feel that way as well. I learned things about myself, some, and then you try to carry on with the positive things that you learned through caregiving.
Linda Abbit 28:24
Yeah, I agree totally. It definitely changes you as a person. And it also makes you aware of other caregivers around you and knowing how to offer them help and respite. Now, if somebody says, oh, I don't need any help, I'm like, okay, give me a task. I know you need help. I've been there. I don't let them just slough me off. I get pushy.
Virginia Naeve 28:48
Yes. Because inside they're thinking, “Oh, my God, I need so much help.” But they don't want to ask, you have to be a little pushy.
Linda Abbit 28:56
And even if it's just sitting with their loved one for an hour, so they can go take a nap or run an errand or get their hair cut.
Virginia Naeve 29:01
That's exactly true. Well, you know, I think it's time for us to wrap up. But I want to remind everybody that Linda's book, The Conscious Caregiver, is available on Barnes and Noble and Amazon, of course, and it has a lot of information in it we couldn't get to today in a podcast, but maybe sometime we'll come back and join us again. And we can continue the conversation. That would be wonderful. But anyway, a lot of good stuff here. I'm sure that you'll be helping a lot of people just from what you've said today and we appreciate that.
Linda Abbit 29:42
Thank you again for asking me.
Steve O’Leary 29:44
Linda Abbit 29:45
It was a pleasure sharing our ideas. Thank you.
Virginia Naeve 29:49
Nice to have you, and for our listeners, thank you for joining us today. Please join us again on Spotlight on Care where we try to give helpful tips and information for dementia caregivers.
Steve O'Leary 30:02
Spotlight on Care is produced by the University of California Irvine Institute for Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu
Transcribed by https://otter.ai