Asking for a Friend - Health, Fitness & Personal Growth Tips for Women in Midlife

Ep.80 The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

• Episode 80

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My friend, Claudia, thought this would be a timely topic for many us, and it did not take me long to find an expert in the field of eldercare.  

There can be many rewards for caring for ill or aging parents, a spouse, relative, or a special neighbor.  It is truly a labor of love, but with that there can be some very challenging and trying moments that come with the territory of having this honor.  The role requires patience, tenderness, selflessness, and hard work.  

The emotional toll and physical stress of caregiving can lead to burnout and exhaustion, causing caregivers to put themselves and their own well-being in the background.  How do we put aside the guilt, sadness, and isolation to be kind to ourselves and prioritize self-care?

Linda Abbit was a caregiver for more than 25 years.  She, too, faced many of the same demands other caregivers experience.  Many of us have aging family members, and Linda's work in the eldercare field and volunteering for the Alzheimer's Association, has provided her the wisdom and knowledge to help us all reduce stress, avoid burnout, and be a more relaxed caregiver.  

Linda is the founder of Tender Loving Eldercare,  and the author of the book The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself.  She addresses the topics that are vital for anyone who is in the midst of this sometimes dramatic life change.

In this episode Lina Abbit and I discuss:
 - Techniques for mindful communication with the person in our care
- What to do if siblings are not willing to help out and tips for doctor appointments
- How to keep daily self-care top of mind
- When to consider in-home care or assisted living
- What to do when the whole family is not on-board
- The dreaded end-of-life conversation
- The grieving process for the caregiver
- There are resources, so you don't have to go it alone

Resources:
Office on Aging
Alzheimer's Association
Google - Geriatric Care Managers in your area

You can find Linda Abbit at:
https://tenderlovingeldercare.com/
or on Facebook

She is available for speaking engagements locally or on Zoom.

Linda's book is available on Amazon and Barnes and Noble.






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Speaker 1:

This particular podcast drops the week of Thanksgiving, and that was intentional. If you host a big dinner this week, or maybe even during Christmas, despite how exhausting it is, it can also be very rewarding and a true labor of love. There are lots of things in life that I would term a labor of love. For many of us it either has been or will be that time you will care for an ill or aging parent, or maybe it's an aunt or even a beloved neighbor. It too can be exhausting, yet a rewarding honor to be there for that person who has been there for us. But I'm not going to sugarcoat it. There can be some very challenging and awful moments too, but that can go with the territory and the commitment. The trick is not losing yourself in the process and become so overwhelmed to the point of sacrificing your own health and wellness. My dear friend Claudia suggested this topic and it took all of two clicks in Google to find an expert to take us through what she defines as the conscious caregiver and during this week centered on family and being thankful. I think this is a perfect discussion to have Health, wellness, fitness, relationships and everything in between. We're removing the taboo from what really matters in midlife. I'm your host, michelle Fohlen, and this is Asking for a Friend.

Speaker 1:

Welcome to Asking for a Friend everyone. Our guest today is a keynote speaker, media expert and author of the book the Conscious Caregiver a mindful approach to caring for your loved one without losing yourself. Linda Abbitt was a caregiver for over 25 years and she, too, faced many of the questions and challenges other caregivers are experiencing or may in the future. Many of us have aging family members and Linda's work in the elder care field and volunteering for the Alzheimer's Association has provided her the wisdom and knowledge to help us all reduce stress, avoid burnout and be a more relaxed caregiver.

Speaker 1:

Welcome to Asking for a Friend, Linda Abbitt. Hi, hi, thank you for having me. Oh, I'm delighted to have you and I will say this topic was suggested by a friend of mine. I had asked for topic ideas and she was the caregiver to both of her parents and I think she thought you know what I wish? I would have had some more resources as I was going through this process. So I think very timely for many of us. But before we get started, linda, I would love for you to tell the audience a little bit more about you.

Speaker 2:

Well, I was born and raised on Long Island, New York, and had relatives out in California and once I got a taste of the sunshine and warm weather when I was a child visiting I grew up saying when I grew up, I'm moving to California, and so I did. After college and grad school I moved out here and have been here ever since. I do miss full foliage. I don't miss the snow and the ice and driving in it yeah, of course not. And I was lucky to be able to be a stay at home mom. And then I became a caregiver, for my parents were talking to a little bit later, of course, through that experience I was ahead of the curve. I was 24 when I became a caregiver, technically, and most of my friends are now in their 50s, 60s, 70s being caregivers. So when I started caregiving I started a blog because I love to write and it was to write down things I was learning, so my friends wouldn't have to reinvent the wheel. So I started the blog.

Speaker 1:

Yeah, you were really young, you were 44, when all this was happening with you.

Speaker 2:

My parents were old enough to be my grandparents because I was adopted and they were in their middle 40s when they adopted me. There was a whole generation skipped there, so I cared for them ahead of all of my friends and I wanted to be able to share what I was learning. So the blog then was found by my publisher online and they were looking for a family caregiver to write a book for family caregivers, and I was also a volunteer support group leader for the Alzheimer's Association while I was caregiving. You learn as you go and I also learned from great resources that were around me. There weren't as many as there are now and there certainly was not online resources at that point.

Speaker 1:

No, absolutely not so, Linda, did your parents both have Alzheimer's?

Speaker 2:

Just my mom did. She was diagnosed at 89 when they were living in Florida and I was out here. How did you do that? Well, it started when I got a phone call from my dad and he said Linda, the doctor says your mom has Alzheimer's disease, but shh, don't tell anybody, because back then, 25 years ago, it was something to be ashamed of.

Speaker 1:

Oh.

Speaker 2:

Compared to now when there's so much more information and resources for people who have brain disease, dementia, alzheimer's etc. First I was just a long-distance caregiver. He was her primary caregiver, so I would fly back and forth. And I was also a sandwich generation caregiver because my son was nine years old when my mom was diagnosed.

Speaker 1:

Oh my gosh. So you had a ton on your plate. How did you manage all this emotionally?

Speaker 2:

I'm an only child, so the only person I really had to vent to was my husband and I often would come home and say this is too much for one person, but I used the resources I had I would vent to him. My friends I also while I was caring for my mom, which is another I have to go back to that story because they ended up coming out here so I was a more hands-on caregiver then. But I was also part of a six-cousin caregiving team and we were caring for my aunt who lived in Manhattan, who had no children and was a widow. So I was also doing that. Part of the time I was caring for my mom.

Speaker 1:

Oh, my word, were any of your cousins in the New York area at the time?

Speaker 2:

Nobody was.

Speaker 1:

Nobody was no.

Speaker 2:

And so, as a result of that, we would obviously take trips. Different ones of us, different combinations of us, would take trips to help her, but we also did hire a geriatric care manager, which I highly recommend. Yes, it costs money, but it is well worth it to have somebody in that locale checking on your loved one weekly, daily, being there for an emergency because none of us could get there quickly enough.

Speaker 1:

How do you find resources like that? Linda Online now, yeah.

Speaker 2:

Just Google geriatric care managers in my city and there they come. There's also office on aging across the country and they have a ton of resources. Alzheimer's Association is across the country. They have a ton and most of these resources are free. They won't charge you for them. Oh really, alzheimer's Association has daycare centers, workshops for caregivers, support groups, tons of education.

Speaker 1:

I'm going to put this in the show notes because I bet a lot of people don't know that these resources are available, because I can only imagine there are a lot of people out there right now that are really just trying to sweat this out on their own and they may not have to do that. For you, caring for your aunt, you had your cousins to balance that, having your parents out in California, which is great, but you were still on your own. Did you feel sadness and isolation around this time?

Speaker 2:

Definitely I think all caregivers feel like nobody understands what I'm going through, because nobody teaches you how to be a caregiver when you're growing up, just like nobody teaches you how to be a wife or a mom. It's definitely isolating and you feel alone and a lot of times your friends will disappear because they're afraid and they don't know how to deal with it. And some friends will rally around you and help, but other people kind of run the other way because they don't want to face the fact that they might be having to deal with these same issues as they get older.

Speaker 1:

Right, and I guess you may feel a little guilty at times, because you may feel like you want to be somewhere else. You're missing the parties. You may be missing the girls' trips, those types of things that you would normally be able to participate in. What do you tell people having been through this journey? How do you get them over? That I'm missing everything. My life's passing me by right now because I am committed to this.

Speaker 2:

You're absolutely right. Caregivers feel guilty even when they're caregiving, because they feel like I'm not doing the best job I can. Caregiving is one of the most challenging roles you'll ever have and I say it's okay and important to acknowledge those negative feelings, but also to limit them, Feel them, but then you have to go on with your day. You can't just follow in it, and the one way I did it was I allowed myself to have a pity party each day if I needed it or whenever I needed it, but five to ten minutes and get it all out, whether that's talking to a friend or crying, or going in your car, rolling up the windows and screaming, whatever works. Get it all out and then you have to go on with your day. On the flip side, caregiving has many beautiful moments too, and I am grateful that I had the chance to be a caregiver.

Speaker 1:

Yeah, that is time you don't get back and so, as stressful as it can be at times, we really do cherish those moments that we do get to spend with our parents, or it could be another loved one. You talk about mindful techniques to communicate with the person in your care, and I probably struggled with this, and let me tell you why. My mom was sick for a while and there came that time when we were going to have to do hospice and I didn't want to tell my mom that we were going to start hospice. I never said those words to her, I just assumed she knew I couldn't bring myself to that and I'm curious around communication. How much should we be sharing with the person in our care?

Speaker 2:

I think you were being kind by not telling her honestly there's no one-size-fits-all answer about how much you should share with your loved one, because every person is different and every family is different but I think you were being kind by not saying those words. I didn't either, but of course my mom was cognitively not able to understand that. I just think you were being kind. As much as I am also all about communicating with our loved ones and our family team members. I think it's not necessary to always tell everybody everything. I had to make a decision like that too.

Speaker 2:

When my dad passed away, my mom was in a small boarding care home, or residential care facility is the new word for it. I didn't see her for a week after my dad died. He died first, which is often what happens the caregiver dies before the care recipient. So I didn't see her for a week. That's OK, I've got to go back. They were in two different homes because my mom was way more declined than my father.

Speaker 2:

I would pick my dad up two or three times a week and we'd visit my mom for the afternoon or evening or whatever the occasion was, and I didn't think it was kind to tell my mom that my dad had died. Because I didn't know she'd be able to hold on to that information and if she did it would just make her so sad. They were married over 65 years when she was diagnosed. So when I walked in I just could tell she didn't notice that my dad wasn't with me, she just was, her face lit up, she was happy to see me, and that's when I knew. Don't tell her, because even if she could hang on to the information a little bit, she might say where's dad, and the next time where's dad? And the next time where's dad? And why recreate that pain over and over and over for her?

Speaker 1:

Oh, that's such great advice. I love that. Now, on the same topic of communication, this did not happen to me, so I want to make this very clear in case any of my siblings are listening to this podcast. I'm not calling anyone out Linda, Gail, David but what if your siblings are not willing to help or provide relief for you? You're not alone, because I know this happens all the time, linda.

Speaker 2:

I know from other people that have told me yes, I was going to say that I hear that over and over again. My brother won't help, my sister won't help. You can't force someone to take on that responsibility. It's also their loss as far as I'm concerned, but that's another earth topic. Instead of trying to force somebody to do something they don't want to do, just let it go and find somebody else to step in their place, such as in-laws like son-in-laws, daughters-in-laws, cousins, neighbors, friends, support group members. You do need a caregiving team, because no one person can do it all themselves. But I really don't think your energy is well spent trying to force somebody to do something they're just not wanting to do or able to do. Right.

Speaker 1:

What about tips on doctor's appointments?

Speaker 2:

I suggest starting to go to doctor's appointments as early as possible, even before they start declining. If they'll allow you to go and be prepared. I even do this now write down your questions and have them in your hand before you go in there, so that you don't forget to ask anything important.

Speaker 1:

Should we take notes during the weeks prior to the doctor's appointment just to maybe call out certain things that we're starting to see, maybe their behavior or symptoms that we might be seeing?

Speaker 2:

Definitely. I was just going to say take notes in between visits of anything that catches your eye or that you feel is important to bring up. At the same time, let the doctor and your parent have that relationship. Don't talk to the doctor as if they're not in the room or don't let the doctor talk to you as if they're not in the room. Have that respect and, as long as they're cognitively able, it's their relationship with the doctor.

Speaker 1:

I know You're probably thinking okay, why is she laughing? Because before I was going to the doctor's appointments with my mom, I would call her after her doctor's appointment and I'd say how did it go? What did you all talk about? Oh, it was fine. And I said what did he say? Oh, he said I'm fine. And I'm like that's bullshit. I know that's true, exactly, exactly. Because she needed to write stuff down, because her memory wasn't great, right, and oh my God. So then we had to start going to appointments with her.

Speaker 2:

So I started laughing. I was going to say take notes during the appointment and then review it with your parent and say this is what the doctor said yeah, this is what you have to do, and a lot of times I mean people shut down when they hear something scary. The doctor says and they're not going to hear everything, honestly, that they're telling them. So it's really important to have another set of ears and a note taker there.

Speaker 1:

And it's assuming that your parent can really hear. That's the other part of this, too. If you have a parent that really needs hearing aids and they won't wear them, that's the end. Am I sharing too much about my own journey?

Speaker 2:

No, my mom wore hearing aids and luckily nothing terrible happened, but because she had Alzheimer's. One day she took one out and she thought it was a piece of candy and popped it in her mouth and started chewing it.

Speaker 1:

Oh no.

Speaker 2:

That was the end of her hearing aids. We did not let her use them again.

Speaker 1:

Oh, dear, yeah you know, but oh well, I'm sorry to hear that. Okay, back to the caregiver. Yes, you say that self care is not selfish. How do you suggest we practice self care each day when you feel like you are on 24?

Speaker 2:

care is vital for a caregiver, even though it's against our basic instinct to always be helping others. Caregivers often lose themselves in the shuffle of our busy day, but if they have to think about if something happens to them, then what will their loved one do? Who will care for them? So that's why self care is not selfish, it's part of caregiving. Each person will have their own way of self care because every one of us is different and have our own interests and hobbies and likes. But in my book I suggest making a happiness list where L, I S, T is an acronym for likes, interests and satisfying things, things that bring us fulfillment.

Speaker 2:

So spend a few minutes and sit down and write five or 10 things that you used to maybe do as a kid, that you've gotten away from, or something that you lose track of time while you're doing. Rediscover or continue with passions that you have and then make just start with five minutes. Self care can be done in the middle of the day or at another time, totally, but just start with five minutes a day to treat yourself to something that you love doing and, yes, it might have to be modified, but at least connect with that thing that gives you enjoyment, fulfillment, relaxation, and if you could just start with five minutes a day, I guarantee you're going to want to increase that and then try to put it in many different parts of your day.

Speaker 1:

As you say this, I think even if you're in a care facility, they're visiting or you can bring a yoga mat and just throw your yoga mat down and do some stretching, and there's things that I think we can do, that we just have to be kind of creative in a lot of ways, exactly.

Speaker 2:

Yeah, it's amazing how creative you can get in order to fit your passions in the day.

Speaker 1:

When we talk about the steady decline of someone's health and we have to start having that conversation about a move to some kind of a care facility. It's a huge decision. How do you have that conversation when you know it's going to be met with great resistance? And again, this is what I'm my own. We found the most lovely, absolutely posh retirement places for my mom and she was like hell, no, I'm not going anywhere. And we're like okay, you know, other than tying her to the top of the car, there was no getting her to do that. How do you have that conversation? Because it does get met with resistance so often. You have to take baby steps.

Speaker 2:

It's not going to happen all in one conversation. I'm sure you've found out through your own experience. You need to talk to your loved one, and also your siblings or whoever else is on your care team, to make the decision first, without even telling your parent yet, and then approaching them with the idea you were never able to and that happens Sometimes. You're not ever able to move your loved one to a facility and you just have to then bring in care. But baby steps. For example, if your mom had had somebody that moved into this beautiful retirement community, maybe just have them go visit and just see it. Nothing about a tour, nothing about would you like to live here, just introduce it. Just introduce it as oh wow, did you know that this place even existed?

Speaker 1:

Oh, she had one of her best friends living there. Oh, I didn't even matter. I'm telling you my mom was awesome, but she was stubborn, let's just face it. She was a lovely woman though.

Speaker 2:

This points out. So everyone's journey is different. My parents were the opposite. They never wanted to live with us. Even when they moved to California they spent about three weeks here, but then they told me my dad said he called me from Florida and he said we're moving, find us a place. It was never like we want to come live with you. They were the opposite. Oh really, it's just, everybody's journey is different.

Speaker 1:

Yeah, my dad would have lived with me. Now, my mom, she wanted to be independent. But my dad would be like, yeah, I'll move him with him. What if everybody's got that one sibling that has to throw a monkey wrench into everything? So what if you have that one sibling that says, no, I don't think we should do a care facility. That's going to cost too much money. They can stay at home. Because I know this happened with a friend of mine. Everybody was in agreement, but there was the one sibling that said, no, we're not going to spend that money.

Speaker 2:

That's a really tough one and they couldn't outvote him or her.

Speaker 1:

I think they did eventually, but you have to have that conversation.

Speaker 2:

Yes, you just have to be blunt and say is it safe for mom or dad to live at home alone anymore? And I'm not just talking about physical safety, cognitive safety and emotional state. Point out to that sibling would they know what to do in case of an emergency? Are they still able to call 911 and move quickly if they needed to leave? I mean, safety is the main issue and I think somebody would take pause with that if you point that out to them.

Speaker 1:

That's a great point. There is that dreaded conversation that we have to have about end of life care and wishes. When do we start to broach that subject with our loved ones?

Speaker 2:

I recommend that you start doing it early in caregiving, because what if something happens and your loved one can't communicate their wishes to you? And yes, they're very difficult to have, but really don't wait until there's a health crisis and you don't know the information. It's really a gift if parents could share what they want for their funerals and burials with their children. It'll result in way fewer regrets and much greater peace of mind. They're hard to have, but it's so important to have.

Speaker 1:

Do you have a checklist for the family to make sure that they do cover off on all those details?

Speaker 2:

Yes, I have a checklist in my book.

Speaker 1:

Oh good, yes, Okay good.

Speaker 2:

I have a whole chapter on advanced care planning and I have a chapter on grieving and what comes after caregiving, plus all the other beginning parts of caregiving.

Speaker 1:

Well, I was going to ask you that, linda. So you had spent all this time caring for your parents, and I can imagine there being a huge void after loved ones pass away. Did you have to kind of find your passion and purpose again?

Speaker 2:

You're absolutely right. You spend a lot of time in energy caregiving and then, when their loved ones are gone, first of all you have to go through the grieving process, which everybody does differently, and I urge caregivers to be gentle with yourselves. Don't compare yourself to how somebody else is grieving or how long they're grieving. Do what feels right for you and then again, baby steps, do what feels comfortable. Some people jump back into work and social life, etc, etc. And other people just need to do it a little at a time. But some people take their knowledge and experience and volunteer or, in my case, I actually became a staff member at it's called Alzheimer's Family Center out here in California and it's the only adult day health facility designed specifically for people with dementia and Alzheimer's disease, and I became their community outreach manager. Because I had all this knowledge and, aside from writing my book, I wanted to help people, so I ended up making a career out of it.

Speaker 1:

Out of my experience.

Speaker 2:

Whatever path the caregiver takes, they should definitely keep pampering yourself. Do things that'll nurture your soul, your body, your spirit.

Speaker 1:

As you were talking, I started thinking about women our age are also losing spouses right now, and some of that same advice I think holds true. We're not just talking about parents or aunts or uncles. We're talking, possibly, a spouse, that you're in that caregiver role and you're having to heal from not only just being the caregiver but from losing your better half.

Speaker 2:

Absolutely. It's scary, yeah. Even if you do it, it's. Caring for a spouse is completely different than caring for a parent, for obvious reasons.

Speaker 1:

So when you counsel someone on caring for their spouse, how is that conversation going to be different?

Speaker 2:

Spouses often go into denial first. When there's a diagnosis, children will jump online and research and look up everything and be ready to go and let's do this, let's do that. Very proactive Spouses, on the other hand, often not everybody, but often go into a denial phase first and you have to face that and get through that. As hard as it is to watch your parents decline, it's even harder and scarier to see your spouse decline and realize that a lot of the dreams you had may not be coming true.

Speaker 1:

Yeah, probably that recovery process after that is very individualized too. When you feel like you're ready to get back out to life. Do you have advice for that person as well? Well, the same as what I said before just be gentle with yourself.

Speaker 2:

Grieve as long as you need to. When people start asking you to do things again, don't say no. Push yourself to go, because if you say no, eventually those invitations might dry up. Unfortunately, I've had a lot of friends who have lost spouses at young ages and they said there were probably 500 people at the funeral and now I hear from five of them. It's not that they didn't say yes, as I was just saying, but a lot of people just go away.

Speaker 1:

Yeah, I was just doing some writing before you and I got on to record and I was talking about community. I look at community and connection as being one of those pillars of self-care. I think women are much better at this. Don't you agree about Definitely? Because I see a lot of men they have like just a couple friends and they're good with that, but women continue to nurture and find new friendships and that sort of thing, and I have found that even to be even more prevalent with doing this podcast. It's been fantastic. But I think just ensuring that you do keep those connections alive, it's just important for our overall health, don't you think?

Speaker 2:

Definitely. Even before COVID and we were quarantined, social isolation was the newest public health crisis. So making those connections and nurturing them are very important.

Speaker 1:

And you think about if you are that caregiver and you're on call 24-7 and you are missing out on those connections. Getting creative in how you do stay connected with people. You know, have that friend over to where you are, Just have them come for coffee, or can you walk with me around the block today, or I just. You know I'm thinking of all these things that they may seem hard, but we've got to make that easy for ourselves because the self-care piece is so important.

Speaker 2:

And I think because I was a younger caregiver and I had the nine-year-old at the time, I was involved with his activities so that and I had a husband who could step in if need be so I could get away, and so I had that connection. On the other, even though it's hard to be a sandwich generation caregiver, you also have pluses of having that community.

Speaker 1:

Absolutely Speaking of self-care, linda, so I've been asking all my guests what is one of your pillars of self-care.

Speaker 2:

For me it was an is dancing. I always loved to dance and since I did have a husband who could cover for me, I was able to start going to one time a week dance classes through my city parks and rec department and it was swing dancing, lindy Hop, east Coast Swing and so I would go and take a lesson and then do the social dance after and I would dance. And dancing is a great self-care tool because you could do it anywhere. You could always turn on your radio at home or, I guess, spotify now yeah and dance. You could just have a dance party at your house and, by yourself, just let it out. Moving dancing is my passion and what I did for self-care.

Speaker 1:

Linda, I can see you busting a move in your kitchen while you're making dinner. I can see it now Exactly.

Speaker 2:

I really can and I was going to my son laugh at me, but I don't care, that's all right.

Speaker 1:

That's all right. Oh, that's great. What are you working on now? Are you working on any other projects or speaking engagements?

Speaker 2:

Yes, I speak locally and also through Zoom on anywhere in the nation On a lot of the topics we touched on today. I could go into further depth on those, and I'm also thinking about writing a book for caregivers to let them know they're not alone, collecting caregiver stories and what caregivers have learned from their experience. So those are cooking right now in my brain.

Speaker 1:

Oh, and don't let them cook too long, ok, because if we let them cook too long then we don't do them. I know I call this throwing it up over the fence. So if you throw it up over the fence you can't go get the ball. So now you have to write the book, just so you know.

Speaker 2:

OK.

Speaker 1:

Yeah, it out there, that'll happen. I'm holding you to it, linda. Ok, linda, where can people find you in your book? I have a.

Speaker 2:

Facebook page called Tender Loving Elder Care, but the best place to find me is on my website, tenderlovingeldercarecom, and on it people can contact me with questions. They can buy my book. Of course, I also continued my blog. There's a way to get on my email newsletter there and I don't bombard people. I send out my email newsletter every couple of months with more resources and ideas and things to help caregivers that are either new or veteran caregivers somewhere along their journey.

Speaker 1:

Alrighty, and I will add that to the show notes as well. Linda Abbott, thank you for being on Asking for a Friend. Thank you. Follow Asking for a Friend on social media outlets and provide a review and share this show wherever you get your podcasts. Reviews and sharing help us grow.