[00:00:00] Rayna Neises: “There’s a difference between those caregivers that are on autopilot and those that are conscious caregivers. Conscious caregivers are rooted in agape love and the sheer humanity of caring for a loved one.”, according to Nadine Roberts Cornish our guest last week. Welcome to a season of caring podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises your host and today we’re going to talk more about the five steps of a conscious caregiver from episode 117. 

[00:00:39] Nadine shared the five steps to conscious caregiving on our last episode as Step one helplessness. What to do or when to do or where to turn that helplessness, that you first experience in the very beginning stages of either a new event or a new season within your [00:01:00] caregiving or when you’re beginning the caregiving. She also mentioned that you’re often pushed quickly out of the helplessness stage and into recognition. At the recognition stage. You realize that you don’t know what you don’t know, and you have to learn to get comfortable with that idea because you really won’t know everything as you progress through this caregiving season but rather that will also lead you to the next step, which is the process. And that’s where the puzzle pieces start to come together. And it’s very uncomfortable, but you will start to find a rhythm. You will start to find how to ask for help and that you will understand what things you need to learn more about.

[00:01:42] That will then eventually lead you to the acceptance stage. The acceptance of some of that helplessness that you might feel the acceptance of the situation that you’re in, or the lack of control that you have over the situation, which eventually leads you to [00:02:00] surrender. As I listened needing Roberts coordinator, I really was brought back to a point in time where. Felt like I experienced this within my caregiving season. I think like many things this can be true of the big picture. And Nadine mentioned that it’s cyprical call. It’s not necessarily a once through progression, but it can also be the steps that happen within each incident.

[00:02:27] So as I thought about this, I thought about where I shared in chapter four. of No Regrets :Hope for Your Caregiving Season, our experience with kind of that learning to know what you don’t know and learning to embrace that, which she refers to as the process stage. I think one of the places in which that becomes very obvious of these stages or steps of conscious caregiving is dealing with medical professionals. Whenever I was thinking about her process and what she shared. As my dad progressed in his disease we [00:03:00] found ourselves in places where things changed and either his frustration rose or his ability to process what was happening around him became difficult and we needed help. And we had been working with a group of doctors who specialized in senior care and dementia and Mild Cognitive Impairment, all different types of things doing research. As dad participated in research studies. He participated in some drug trials with this group and early in his disease, we felt like they were very supportive and helpful, but as things got more challenging, we really struggled. We struggled to feel heard. And as a caregiver, you probably can relate to that.

[00:03:46] I’m not sure that any of us will go through our entire caregiving season feeling like we’re seen and heard, but this was a time when he was really having a hard time. He was just more irritable [00:04:00] and at times, that grumpiness would lead to kind of batting at your hands or that kind of thing. Not really violent, but just more leave me alone. And that wasn’t his typical demeanor so it was concerning. We also had some family vacations planned, my sister and I, and so we knew we were going to have some traveling going on and we were trying to be proactive and make sure that things were covered and that our caregivers were well taken care of. As well as my dad being in a place where he was at his best and was happiest as possible.

[00:04:34] We were calling and leaving messages and there were no return calls and it felt like it was just accelerating and we felt really helpless and very frustrated as they weren’t getting back to us. I believe they called back and left a message and just said that they called in some medication that would work hand in hand with his antidepressant and that she could pick it up at the pharmacy . I was up there [00:05:00] after she had picked it up, I was looking at the medication and trying to put it in the pill box then I noticed on the information sheet that was inside as I read some of the paperwork, there was a large warning on the medication that said avoid using with people with dementia. And it literally said can cause sudden deaths. What? That was extremely shocking. And I’ve never seen anything like that on a medication before, as a side-effect. I mean, that’s not a side effect you can get over. Right? And here we had just had this medication called in and we were just told to give it to him. And I was very uncomfortable with that. I was thankful that I noticed that warning before we gave it to him. We did eventually get a doctor’s appointment scheduled. and I expressed concern with this medication and the doctor just said, oh, we prescribe [00:06:00] it to patients all the time. We find it works really well with the antidepressant and I really feel like this is the best course of action.

[00:06:06] And I said, well, he’s been on this same antidepressant for a long time. Is it not an option to change that or to try a different class of antidepressants since there’s more than one? And basically I was just brushed aside and I did not feel that my concern was heard. After further discussion with my sister, we decided this is not okay. As far as feeling like we’re not being heard or not having returned phone calls or having periods of time before we get help and we’re asking for it, we weren’t asking for help frequently. So it really felt just so uncomfortable to have it not addressed as if what we were asking for was unimportant or didn’t matter.

[00:06:53] We thought, well, let’s just see if we can find neurologists closer to where dad lived [00:07:00] and so we made some phone calls and did find a doctor there. Unfortunately, as we asked questions of her, we kind of got the same half answers kind of like, why are you questioning me versus really understanding where we were coming from? My dad had been on the same medications for Alzheimer’s since early in his diagnosis. We were nine years in at this point and felt like, you know, why is he taking all of these pills if they’re for people with early stage Alzheimer’s and he was well past that. All we were told by the physician was, oh, the I’ve taken one patient off of these medications and she had a very adverse reaction. You don’t want to risk that you don’t want to do that. We didn’t feel like he should be taking 14 drugs every day so we really did want him off of those, but it seems to be a discussion she wasn’t open to.

[00:07:52] So again, I went on the hunt, found another doctor into some interviewing. We actually found an amazing doctor who did [00:08:00] listen to us and did take the opportunity to explain what each medication was, what possible interactions could be going on and helped us to actually meet the goal of taking him off of some of these drugs that it no longer made sense for him to be on. 

[00:08:16] I think as I look at the steps within that conscious caregiver, I think I felt all of those steps. I felt that helplessness, I felt that move from helplessness to recognition that I don’t know everything, but I do have questions I want to know more. And then moving into that process, the point in which I was really researching and looking for doctors and medications and what things were going to work best for our family in addressing this medical need and the doctor’s team.

[00:08:54] And then from that process, really being able to move into [00:09:00] acceptance of. Not until we really felt that we were there. And that was finding someone who made us feel heard and made us feel understood and was able to really answer those questions and address those concerns. And eventually surrender, surrender to knowing that we weren’t going to cure him, but rather we were just going to be able to continue to support him and keep him as happy and as healthy, as long as possible. And that was definitely our goal.

[00:09:30] So when I think of this process, I can think of this situation and how seeking out the right physician for our family to be a part of our team made such a huge difference and really did help us to provide that care for my dad that was so important for me of that humanity for him. And understanding of the situation, but definitely keeping his best interest at heart. 

[00:09:58] As I thought of that, I [00:10:00] wanted to share with you today, just some of the, of our experience not liking the answers that we got, understanding them, but still feeling uncomfortable with where the conversation ended and then how we move forward to a new step of looking for different teammate that when we had those conversations, it didn’t mean the doctor needed to agree with us. Yes, eventually we found one that did, but I think for me, it was more about feeling heard. To express these concerns from a warning label on a medication that could cause sudden death to not being open to trying to removing some of the medications that according to the label and the purpose of the medications were no longer helpful. To finding someone who would sit and have a conversation and help us understand what each medication was for and how it could be impacting [00:11:00] him and if there were alternatives. Caregiving is a complex process. There are so many pieces involved in it. It’s so important to be able to find those advocates that are working with you on behalf of your loved one. 

[00:11:14] Normalizing understanding the process, I think can be really helpful to us understanding that helplessness is very typical and it will come and go throughout your caregiving season as new challenges come or as new seasons happen within the season, that helplessness is definitely a feeling that you are likely to experience from that helplessness, you move into that stage of recognition of needing help of understanding that you’re in a new season, you’re maybe feeling in over your head and that it’s time to move into the process, the process of putting the puzzle pieces together to gathering the resources that you need.

[00:11:51] Adding the team members that can help bring you to a place where you’re able to better develop a rhythm and find [00:12:00] that sweet spot for your loved one, offering them the opportunity of happy and healthy as long as possible. And eventually moving into acceptance that this is where you are. This is what is happening and that’s okay. When you reach surrender. 

[00:12:15] I found Dean Roberts Cornish’s five steps to a conscious caregiving, similar to the steps of grief. And I think the benefit of understanding the steps of caregiving, a conscious caregiving can also be helpful, just like the steps of grief and identifying possibly the underlying reason for the feelings that you’re being overwhelmed by in the moment, or even being able to look back and see that you’ve already gone from the diagnosis that led to the helplessness that led to the recognition of needing more information and moving you into the process stage, or if you’ve found yourself stuck in [00:13:00] the helplessness, realizing that the next step of moving out of helplessness is that recognition which will then lead you to the process, which can help you find the pieces and the support and the help that you need in order to continue on through this caregiving season and do it well.

[00:13:22] I felt like taking some additional time to talk through that and to share my example might be helpful to you today. Maybe even for you to stop and think about where you’ve experienced this five steps and how you found a way to move through each of those phases and what’s been helpful to you in those phases. 

[00:13:43] The unknown piece of caregiving can be so overwhelming at times that I think understanding these five steps can help you to see the patterns of what you’ve done well and how you’ve succeeded in [00:14:00] supporting your loved one through this season and offer you the encouragement you need to continue doing the good work that you’re doing. 

[00:14:07] Thank you for joining me today on A Season of Caring Podcast and just a reminder. This podcast has been created for the encouragement of family caregivers. If you have financial, legal, or medical questions, be sure to consult your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation