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*The following is the output of transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors.
And Welcome back everyone to answers for elders radio and I am here again with Daphne Davis and we’re here talking about the things that our family sometimes are afraid to talk about. So I hope that you’re listening with an open heart and certainly willing to hang in there with us as we talk about these difficult times of facing end of life. And we are here, of course, joined with our Wonderful Daphne Davis Pinnacle senior placements, and welcome back, Daphne. Will thank you so much. You know, we talked a little bit about personal stories and about healthcare directors and all those things, kind of the general your story. But there’s a lot of families out there that they maybe have, you know, may have a parent that’s had a diagnosis all of a sudden they realize it’s terminal of some sort. Maybe it’s a long term situation, maybe it’s a short term situation. So I guess my question is, where do we start with all this? Very good question. I’m going to go back to Margaret and what ire with you, because we live, I live in Washington and my husband, you know, my husband and I have been Washington and Margaretson Colorado with her daughter and her and it has been a conversation for quite some time about helping Margaret. Now, along with the disease processes that I mentioned earlier, she also, because of those disease processes, has been experiencing multiple falls and some of them have been pretty catastrophic, requiring partial hip replacement, having, you know, skin tears that’sive. have to have limitations in her movement, and so there have been signs that are going on, and so I want to talk a little bit about the signs and and how do you know when you should start having this conversation? So we started having this conversation about six months ago with Margaret and it was very gentle it was more about what her highest values were and her through that conversation we discovered her highest value was to be to remain independent, very strong personality. She is very self sufficient. Her husband had died thirteen years ago and so she has learned a new set of skills. She doesn’t like to be a bother to anyone, right down to it’s clearly painful for her to lift up her arm to have a bite of food, but she’s like, I’ll switch to my lat her sentence to me was I have to learn how to do this, I’ll do it with my left hand. That’s Margaret’s personality and so that was one of step. Yeah, and especially with Parkinsons, be get getting the brain, and I can just imagine having clpd with a vascular situation that’s obviously been contributing to it. You have to almost retrain your brain and sometimes there’s enough that I know about Parkinson. Sometimes your brain isn’t connecting with your motor skills. That’s right. Yeah, Margaret wanted to be very independent. So people are a little, I’m going to use this word appropriately, a little more graceful at allowing help. So Margaret wanted to be independent. Will consequently to that end. She did have horrific falls and she was living in independent and assistant living during this process. I would encourage families to really get connected with the director of nursing services. If your loved one is living in a community, what would that be? Independent living, assisted living, memory care, some kind of residential care like an adult family home or something? Sixs us. Yeah, being in communication and I would encourage the family to listen to what they have to say in terms of services, listen to their perspective because, remember, you are probably a relative to this person as son and daughter, a spouse most often, and you have preconceived ideas. You’ve been very true for your duration of most of your life and to have somebody to look at things from an outside perspective is so valuable. And then your mind and heart to be open to say. I wonder if that’s a possibility. I wonder if mom is really saying to me I need more help, but she doesn’t know how to say the word true. But I think, I think one of the things that you’re saying to comes back on whoever that person is that has healthcare directed. You need to have these conversations of how can I honor you in the best way? So you’re interesting me. Mom, Dad, husband, wife, with this responsibility and I want to honor that in the place where you it’s not my value system, it’s yours, and I think when you talk about values, that is so, so incredibly important, because I learned way quick when I was taking care of my mom. Her values were different than mine. Right, yeah, I knew that over time and I had to learn to step into what would mom want, not what what I want, which are two and highly different things, and I think that’s the thing that we started right. Yes, it is. At the same time, I would ask Margaret even you know, I saw her last Thursday and she we flew into Denver, we saw her, we had a nice conversation. She was clearly in pain, clearly struggling, and I would ask her, what can I do for you? And Margaret would say, I don’t know, Daphne, and she’d be a little frustrated and I, you know, I was like, Margaret, what just happened? Her body would freeze up, she would stop breathing. Margaret, can you tell me what just happened? And she’s like no, but I didn’t quite know how to work through that with her. She just saying, I don’t know. Yeah, in a light bulb went on and I finally said to her, I said, Margaret, just tell me what you’re feeling. Tell me if you’re uncomfortable. It’s not your job to have the solutions. It’s my job out what the solutions can be. And and that that’s the shift that happens when you are on Palliative er hospice care, is that we should not know all the options. We should not know about a spray that creates more Saliba or as a synthetic saliva in your mouth so your mouth isn’t dry, or how to keep your skin from sticking together and your mouth, or how to put pillows around you so that you’re not feeling pressure? That’s not our job to know. That the expert’s job, but it is our job to say my heel on my left foot is aching, and then they come up with the solution. My tongue is sticking to the roof of my mouth, they come up with a solution. You tell me. I mean Margaret said to me gappy waters not working anymore, and so all I did was say that to the hospice nurse and she came with a solution just like that. Wow, that’s amazing. Yes, I encouraged to it, to have people not have to have the solution. Just tell me where you’re at. Tell me that I really need to talk to somebody about my face. I need to talk to my son that’s in Indianapolis, and now come up with the solutions, rather than you going I can’t even dial that phone. How could I possibly do this? Well, and what you’re saying is so important because there’s a lot of families that are listening that may not be to the point where you were with Margaret yet, but these conversations could be happening. Of You know, Number One, do your research on whatever they’re dealing with, so you have an idea of what the progression may be, and it’s always different than what the typical is. But just think for that reason, I’m just understand that piece. And on the other side of it, which I think is really important, is this whole piece of just having that conversation in the very beginning with I remember having that conversation with my mom about the end of her life and even her final wishes. I said, what do you want, and it was very different than what I was going to think. She wanted no, she did not want a traditional funeral, and I was kind of I thought, well, we did one for your sister, your two sisters. They had a regular funeral. Nan Don’t want that. I mom was like, nope, I want everybody to go out onto the yacht and throw pink roses into the water and and have a toast with absolute vodka. You know, that was her favorite and I thought okay, mom will do and that’s what she wanted. Okay, he did not want the big ceremony, you know, and and more and more I think about it, my mom was not an outgoing person. She didn’t she had her circle of friends and again, but those I’m so glad I had that conversation because I would have planned guilt spent because I didn’t prepare in advance right at a traditional funeral that she didn’t wouldn’t have wanted. And this is the thing. I think that we tend to avoid these conversations with our loved ones and then when we get to the point, like with Margaret, it’s kind of hard. Now, how are you feeling, which you know, that’s important too, but to have the education and the knowledge that you have. Most of our families still have no and we did start those conversations. But I would say when your heart is moved, to ask the questions that are hard, push yourself to ask them. I mean my mom and I, my mom is seventy six young, and my mom and I have this conversation and I know she wants a traditional funeral and I ask her, what hymns do you want at your funeral? You know, I know you love music. Right them down, please, and we celebrate this time. I mean I can envision it being more celebratories than mournful because we’ve gone through this and you can give your family that gift. Yeah, you can give them that gift. Yew It’s it’s also a really important piece when you’re living in a community of care to not assume particular things in terms of what tear looks like. Now, Margaret, remember, she’s Independent. She doesn’t want to be a bother, and my language is she’s behind the closed door and an assistant. Living during the time of covid that even means more isolation, and so she was trying to do everything herself. Now, she could have been pushing that button or pulling the string to help her get to the bathroom, to help her get, you know, her glass of water in the kitchen, but Margaret wanted to get her walker, she wanted to have her her oxygen cord laying all around her and try to pay attention to not trip on it. She was independent, but at the same time there is a way that you can have the care staff be involved in her life without her feeling hovered over right, and so it was definitely a dance that I would have done on site, because I have a knowledge to be able to say, can someone check in on her every two hours? Yeah, can subtly get Margaret on a toileting schedule? You know, can we help monitor her body functions so that we mitigate some of the risk that she’s taking? Yeah, Margaret doesn’t have to say okay, now, I can’t even go to the bathroom by myself. No, no, no, it could be very casual and to say hey, Margaret, I was walking down the hallway one to stop in. You know, I’m here, I would love to help you with anything that you need, get some suggestions, etc. Yeah, and I think that’s really important that we talked a little bit more about what’s available out there in this next hour. So everyone gap they will be right back right after this.
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Originally published February 28, 2021