The Stages of Caregiving with Denise Brown0
Understanding the stages we go through on our care giving journeys
Hello, on today’s show we speak with Denise Brown of Caregiving.com
She discusses the stages we go through in our care-giving journeys. Denise covers these stages in even more depth in her book, The Caregiving Years, seventh edition. (Look for the red cover) on Amazon.
All the Best to you
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Price: Well good morning everyone and Happy Thursday to you. This is Price Jett again and we are indeed recording on a Thursday so happy day to you wherever you are and whatever time you’re listening. Today we have a very special guest with us on Elder Care 101. Her name is Denise Brown. Denise has a website that is just loaded with so many resources and pieces of support for those of us that are involved in caregiving. Denise, welcome. Welcome to Elder Care 101.
Denise: Thank you Price. It’s great to be here.
Price: Wonderful. Denise, talk to our audience a little bit about your background. How you came to be involved in the elder care space. I know you’ve been doing it upwards of twenty years now, so talk to us a little bit about your journey and what brought you to where you are today.
Denise: When I graduated from college, I started working in trade magazines. If you’re familiar with that, trade magazines are really about advertising. What I wrote, no one read. It drove me nuts. I thought there’s got to be something else out there for me. I’m a native of Chicago, but at the time I was living on the East Coast. I thought, well I’ll try some freelance writing. I’ll try to get some gigs out of New York City because I lived just north of Philadelphia, and I’ll get a part-time job just to tide me over. I ended up working in a congregate meal site in a little town along the Delaware River in New Jersey. A congregate meal site is a place where seniors in the town would come for a lunchtime [made 00:01:43] meal, and we also delivered meals on wheels from the location. That was the first entree for me into working with family caregivers because the sons and daughters of the seniors that would come for lunch, would call and say, “How did my mom look to you?” I did that for the summer, and I worked for an agency to who then promoted me to manage a respite care program for that county in New Jersey. New Jersey-
Price: Was this just out of college?
Denise: I was five years out of college, so at the time I would have been twenty-seven.
Denise: I worked for an agency that managed a respite care program in Hunterdon County in New Jersey. New Jersey has this fantastic respite care program that was started in 1984 by then Senator Bill Bradley. It’s just a fantastic program. That really threw me into working with family caregivers. Everyday I would either talk to a family caregiver on the phone, or go visit one in their home, and I was just fascinated by their stories, and that really tapped into the writer in me, because when you think about care giving, all the elements of a good story are there. There’s a mystery, who’s going to help? There’s drama, because you never know what’s going to happen next. There’s also a mystery, when is the doctor going to call back, and there certainly is a comedy. All those great ingredients for a story were right there.
From there I continued working with family caregivers in different settings, nursing homes, and I decided, you know what, there’s not a lot of support for family caregivers. I created a newsletter then, so I matched up my publishing experience with my experience in working with family caregivers. The newsletter was like an at-home support group, so it’d be something that went to the house. You didn’t have to leave in order to read stories from other family caregivers and get tips and insights and information. Then a friend of mine told me about this newfangled thing called the internet. I thought, I want to be on that. Christmas 1995, I took an online class on how to build a website and I launched a very simple website through Prodigy, if you remember Prodigy in the old days.
Price: I do. I do.
Denise: Yeah. I thought, well I’ll just see what happens. What happened was people came to the website. I thought, well I need a domain name, so I got Caregiving.com in August of 1996 and then it just started from there.
Price: Oh my goodness.
Denise: What I found was, what people wanted was to connect with someone in a similar situation so we started online support groups, which were really listerserves, if you remember what’s a listserve
Price: I do.
Denise: Yep. Where we connected with email message-
Price: We’re dating ourselves.
Denise: I know. All this old stuff right? From listerserves, we went to online support groups, and now we have chats on Caregiving.com. We have three daily chats at 9 am eastern time, 2 pm eastern time, and 9 pm eastern time. We just extended the chat hours from one hour to two hours. We also have weekly chats for specific situations, so for instance, on Tuesday evenings we have a chat for those who are caring for a spouse. We have daily chats, weekly chats and monthly chats. The chats are all moderated by members of Caregiving.com who have cared for a family member or currently care for a family member. It’s all about peer support.
One of the other things that I really wanted to do when I first started reading about blogs was to create an area on the site where anyone in a caregiving situation could start their own blog. That’s one of the other most popular aspects of the website. Anyone who joins Caregiving.com can start their own blog and they can write about what’s happened during the day, or an experience or overnight.
I blog about caring for my parents and my dad fell in the middle of the night in August. It was at the same time that my mom was hospitalized, so when the EMT’s arrived, and they said “What hospital do you want to go to?” It was obviously the same hospital as my mom, so when we got there at 12:30, my dad went for his CT scan at about 2:30 in the morning. I thought, well this is a good time to blog. I opened up my laptop and I blogged. That’s the thing that’s so marvelous about blogging is that, it’s a journal but yet it’s a journal in a support environment, so people will read what you write and they write you really nice things like, “I get that. I understand. You’re going to be okay.” To be able to sit in that little cubby in the emergency room of an old hospital, an old Catholic hospital on the northwest side of Chicago and be able to blog about what just happened was really marvelous. It was wonderful.
Price: That is marvelous. Denise, talk to me a little bit about the certified care consultant training. I noticed I saw that on your website. Talk to me about that. How that helps people, who receives that kind of training, and where do they use it. Do they typically use it in their personal lives? Do they use it in their careers? Both? Talk to me a little bit about that.
Denise: This is a new training program that I just launched this year, so January 2016 was the first session that started. It came out of a request from a former family caregiver. She had contacted me in September and said, “I love the caregiving years, the six stages. I’d like to be able to present that in the community. I know that I could buy the presentation from you, but I want to know how to present it. I really want to understand the material.” From there, it spun off into this idea of, why don’t we help former family caregivers turn all the wisdom and knowledge and insights they gained during their caregiving experience into a profession? That’s what a caregiving consultant does. They turn what they learned personally into a profession.
The first session which just started in January, just started having some graduates. We have now five or six who are certified. They’re certified caregiving consultants. What they do is consult with family caregivers. They share resources that are helpful, they share ideas, they brainstorm, they point the family caregiver in a right direction and they also listen to a family caregiver who really just wants to vent to someone who gets it. It’s really been a phenomenal program.
Price: That’s wonderful.
Denise: One of the things that happen in a caregiving situation is that you know the ins and out of your community, who helps, who doesn’t and you really gain this expertise in caring for someone with a particular disease process. Yet, when caregiving ends, there’s no way for you to continue to give back and share. That’s what this training does. For a period of eight weeks, and then a bonus ninth week, which is about marketing, you really get an understanding of the caregiving experience. You learn really helpful skills so that you can be a really terrific resource to family caregivers. It’s really been a great experience. I’m so glad I did it. Thank goodness, right?
Price: I think it’s wonderful. Yes, because as you well know, the caregiving experience you see and feel often so alone, but to have someone who’s gone through that before, wow, what a welcome experience. It’s support, not just knowledge support but emotional and other kinds of support as well I would imagine.
Denise: Exactly. We often interact with healthcare professionals so we are interacting with visiting nurses and home health aides and social workers, however, it’s different when you are thrown into a caregiving experience and you’re not a healthcare professional. To be able to connect with someone who’s a resource for you, who understand the stress and the frustration and sometimes really the utter fear because you’re doing things that you think, oh my gosh, am I doing this right? You hate to say this, but the thought is, am I going to kill my caree by doing this?
Denise: It’s just this tremendous responsibility.
Price: Yes, absolutely. Absolutely.
Denise: I should explain caree to. I’ll just quickly tell you how that term came about. I use to use the care recipient. I had a mentor, wonderful woman who created an organization called Children of Aging Parents, years ago. She was really the first one that focused in on family caregiver needs. She was a terrific mentor to me. I use to say loved one, caring for a loved one. She would say, “Don’t use the term, loved one. Sometimes you care for a family member who’s not a loved one. Use the term care-recipient.” That was the term that we used up until 2009. Someone said, on the website, “You know, I just can’t call my mom, my care-recipient. Could we think of another term.” I said, “Of course.” We had a contest. People submitting their ideas for the care-recipient replacement term, and then we voted on our favorite, and caree is the one that won. Now it is a common term. I see it used all over, which I think is just fantastic. I worried that people would want to know, “Well what is a caree?” When people come to the website for the first time, they get who a caree is.
Price: I think it’s very clear.
Denise: Yeah, and people use it all the time.
Price: Carer and caree. I love it.
Denise: Yeah. Yeah.
Price: It makes perfect sense to me. Now you mentioned the folks that had been through the process before. Some had read your Six Stages of Being a Caregiver. Walk us through that. I think that would be really valuable information for people.
Denise: In 1997 I started to think about the caregiving experience and how do you help someone understand what’s going to happen. How do you explain in such a way that’s it’s realistic and yet hopeful? Can you marry the two? I started to think about Alzheimer disease, which is staged, and what a sense of comfort that gives to family caregivers. They have an understanding of a disease process. They understand that where they are and what they’re feeling and what they’re going through with their family member with Alzheimer’s is normal. I thought, well what if we staged the caregiving experience, so that’s what I did. I sat down and I really thought through, well what would be the stages? Initially it was four stages, and then after I posted the stages on the website and ask for feedback, I added two more stages. It’s remained six stages since 1998.
Price: Which were the two you added? Were they on the beginning or the end?
Denise: You know what, I was just thinking that too, which ones did I add? I added the pragmatic, which is toward the end. It’s starts off … Well I’ll just tell you. The first stage is when you think someone in the family, in the future is going to need your care. The second stage is when you just start to help someone. The third stage is when you’re entrenched. Everyday is about caregiving. Then you move into the pragmatic stage. You’re not longer panicked about what’s going on, which means that you move into the purpose. You find more meaning during the pragmatic stage. Then it moves into transitioning. Transitioning is all about moving from doing to being. You’ve spent years doing, doing, doing, doing. It’s toward the end of your caree’s life, and so you switch from doing to being, which sounds so simple, but it’s not. It is-
Price: Explain that a little bit. Explain that a little bit more. When I read the transitioning Caregiver, I read it as your caree is about to transition.
Denise: Oh no. Well they are. They are. Yes.
Price: Yeah? It’s also about the carer or the caregiver transitioning from, you said, doing from being?
Price: Talk about that a little bit.
Denise: Now you see that your caree is at the end of life. It could be the last six months-
Price: I told you something was going to happen. That was my alarm to make sure I didn’t miss picking up my eight year old.
Price: I’m good.
Denise: So funny. Okay, should I start over?
Price: I told you, if there was a boo boo, it was going to come from this end. Denise tell me more about this transitioning from doing to being, and what that means.
Denise: The caree is at end of life. Last few months, last few weeks, last few days. During a caregiving experience, it’s really all about doing. You’re getting your caree to doctors’ appointments. You are ensuring that they’re receiving the best care possible. You’re actively seeking new treatments, new ideas, new solutions. You’re doing. Then, at the end, the doing becomes, what will do you in. What you want to do is switch to being, which is so hard to do because you’re going to think to yourself, I should be doing more. What else should I be doing? Should I be doing more? When really what you want to do is just focus on being with your caree because the end is coming. You want to be there with them. You don’t want to worry about doing.
This one took me a little bit to figure out. I knew there was a transition, and years ago, twenty years ago, to me the transition was about location. Transitioning a caree from home to nursing home. It finally dawned on me about five years ago that that’s not what it is. It’s the transition from doing to being. Here’s the best story I can tell you about that. On the website, we had a blogger who cared for her mom. Her mom was ninety-three and had chronic urinary tract infections, which is very common.
Price: Been there.
Denise: Yep. The blogger was very proactive about resolving these UTI’s. She did not want her mom to have UTI’s, so she did whatever she could to figure out a way to stop the UTI’s. She found a specialist, an hour from their home, so she had her bed-ridden mom drive an hour to see a specialist about the chronic UTI’s. They spent really a day between getting there, being there, getting home. The specialist couldn’t help because there was nothing to do about these chronic UTI’s except, accept that this is what happens at the end of life.
She would write about what she was doing to keep her mother alive. All the things that she was doing. I would write comments to her, and I would say, “You’ve won. You’ve won the battle. You’re mom is home with you. You’ve kept her home. You’ve provided great care. You’ve won the battle. You do not have to fight anymore.” She never got it until a few months after her mom died. She came back to the website and posted an update and she said, “I just wish I wouldn’t have done so much at the end. I wish I would have simply been with my mom.” It’s the battle against death. Allowing that, allowing the process, the natural cycle of life allows us to be there and not regret missing a moment because we were too busy.
Price: Denise, how does a person determine that they are at the tipping point, they’re ready to move into being versus doing when there’s all of the guilt that comes when a person feels like I must keep doing or I’m contributing to someone’s demise. How does a person deal with that? Are there signs, are there signals? How does a person make that decision, that all right, it’s now time to transition?
Denise: I think of an interview I did years ago with a hospice director. He explained what happens at end of life. He had a great suggestion. When you are facing repeat hospitalizations for the same, either disease, impact of a disease and there’s nothing that is helping them get better, helping your caree get better, that’s the time to think about, am I doing too much? Is it time to think about doing a little bit less so that my caree is more comfortable? This is my opinion. We live in a terrific country with amazing access to care that sometimes trips us into over care, where we over treat. It happens when someone goes into hospice. When treatment stops, oftentimes they get better because they’re not in the hospital, they’re not going through procedures. It is easier on their body.
What’s so interesting is we think we have to do, do, do when sometimes, especially at the end and toward the end, the being is what really heals our souls because we connect with our caree in a meaningful way because we’re not involved in the business of doing. It’s really thinking about is this helping? Is my caree getting better or do these treatments, hospitalizations have no impact any longer?
Price: Got it. Got it. I hate to go out of order, but I’m also very interested in what you called the pragmatic caregiving stage. The one just before this. Talk a little bit about that.
Denise: That’s the one where, you’ve been through it all and it does not throw you for a loop anymore. You’re not completely stressed out during the hospitalization because you understand what a hospitalization is like. The healthcare system doesn’t completely confuse you because you know it’s confusing, so you’re not surprised when something confusing happens. You are more in tune with the family dynamics so that when the crazy sibling goes crazy, you just accept it as it is, and you’re not thrown for a loop. I think of it as, there’s no longer that terrible panic. Certainly the stress is still there, certainly there’s still difficulty, it’s just that it’s not the constant panic. Because the panic has eased, you find a purpose. You are able to spend some time thinking about, wow, look how far we came, look what I did. It allows you to keep a perspective about what’s important, and because you’re in this less panicked state and you’re moving into a purpose, you could really find meaning within the experience. The other thing that happens is that, this is the time when you could start to heal if there are any difficulties in the relationship between you and your caree. Most likely together, you’ve been through a lot and so now you kind of think, wow, look at what we did as a team. Forgiveness becomes part of the experience too. How much you did-
Denise: So sorry. Skype went crazy on me. Sorry. Sorry.
Price: That’s okay. I saw a little box pop up that said, “We’re trying to connect the call. Between you two, something has happened to the internet.” So it goes. So it goes.
Denise: [inaudible 00:23:07] the internet. Okay.
Price: Well listen. I was really enjoying your description of the pragmatic caregiver, and I also want to be very respectful to your time and try to get in the godspeed caregiver.
Denise: Okay. All right. Okay. Perfect. Yes, so forgiveness is a really important part of it and it’s really just about forgiving yourself because you think about all you did, all you did without knowing how to do it and all that you’ve figured out, really on your own, sometimes in the middle of the night. It’s forgiving your caree, it’s forgiving family members, it’s forgiving the healthcare system. That forgiveness allows you then to move into that next stage that we had just talked about, where you’re transitioning it, in a really wholehearted way.
Price: Then you’re stage six, your last stage was called the godspeed caregiver.
Price: Talk about that one.
Denise: What’s interesting is that caregiving is a life transforming experience. I think of it as an overlooked life milestone. You are one person when caregiving begins. You are another person when it ends. Because you are different, because you see life in a different way, you’re going to approach your life in a different way, and that’s the godspeed caregiver. Two years or so after care giving ends, it could be about starting a support group for family caregivers to give back. It could be as simple as just being a good friend to your friend in a caregiving situation or it could be that you start a business to help family caregivers. You are different that makes it almost mandatory for you to give back because you can see the power of giving.
Price: Absolutely. I suppose, this is is when I suppose someone would also be looking at, maybe becoming a certified care consultant.
Price: Having this conversation about, is it time to give back into help relieve the burden that other people are facing I suppose.
Denise: Exactly. One of our recent graduates, Colleen, cared for both her parents over a period of ten years. At just about two years after care giving ended, is when she looked at taking the training program. She was one of our first students in our January session. She just graduated and she is ready to go out there. She said, “If I had looked at doing this a year after my dad died, I wouldn’t have been able to do it, but the timing was right.” With two years, she felt like she had enough space from the personal experience and yet enough perspective from the whole experience to feel like, this is my calling. This is what I am here to do.
Price: That’s wonderful. Well Denise, you have a book called The Caregiving Years, which talks about these six stages. Where can people find that?
Denise: You can buy it at amazon.com, you can buy it on caregiving.com. It’s the seventh edition. I update it regularly. You want to make sure you buy the most recent edition, which is the seventh edition, with the red cover.
Price: Okay. The Caregiving Years, seventh edition. Look for the red cover. Denise, thank you so much. I hope people will enjoy going to caregiving.com and seeing all the resources that are there and an opportunity to share and network with other people. Thank you for taking the time to give back yourself today by speaking with us. Greatly appreciate it.
Denise: Thank yo so much Price. It was great to have this discussion with you and to connect. I’m looking forward to keeping in touch.
Price: If you enjoyed today’s podcast, go to www.eldercare101.com and download the full show notes. There you’ll find extra resources and links available. Further, you can also go to the website and click on Ask EC101. Ask your own question and this can be part of an upcoming podcast. Again, that’s eldercare101.com. We’re here to serve you each and every week of the years. GO there, and check us out. Like us on Facebook and iTunes too. I’d really appreciate it. All the best. Talk to you soon.
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