Hope for living, loving, and caring with no regrets!
- [2:09] Know the difference between palliative care vs. hospice and that things have changed over the past 20 years.
- [3:30] Understanding that palliative care might be an option for your loved one can be helpful.
- [4:00] Make sure wills are finalized, and that Advanced Directives and Do Not Resuscitate Orders are in place.
- [4:37] Find helpful information at nia.nih.gov about making decisions for someone else at end-of-life.
- [6:30] ‘Substituted Judgement’ and ‘Best Interests’ are two ways of helping to make decisions that you do not have black and white information about.
- [9:23] Ask specific questions that help you examine all the options.
- [12:21] An Ethical Will (How To Write An Ethical Will | Everplans) is a will that shares your beliefs, values, and life lessons for future generations.
- This episode has been brought to you by No Regrets: Hope for Your Caregiving Season. You can find it at all major book retailers and once you have read it, please consider leaving a review.
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*Transcript is an actual recount of the live conversation
[00:00:00] Rayna Neises: “When you judge yourself for needing help you judge those who are helping. When you attach value to giving help. You attach value to needing help. The danger of tying yourself worth to being a helper. Is feeling shame when you have to ask for help. Offering help is courageous and compassionate but so is asking for help.” Brenee Brown.
[00:00:25] Hi, this is Rayna Neises with the A Season of Caring Podcast, where there’s hope for living loving and caring with no regrets. Today I have a list that I developed while I was thinking about what, those, that we are caring for, want to say to us. The last few podcasts, I’ve been able to interview women who are Cancer Thrivers. Those are on the other side of cancer battles. And as I interviewed them, I was so moved by their courage and what they had to [00:01:00] say about those who were helping them during their season that it started to make me think a little more about. What do those, who are in a season of needing care, want us as caregivers to know?
[00:01:14] So here’s my list- number one. Educate yourself. I’m not sure that most people who are in a season of needing care would say this to us in that blunt of words, or even realize, because they’re in the thick of the crisis, how important this one is. But I know that educating yourself on what’s happening with your loved one.
[00:01:41] Can be empowering. It can both empower you to provide better care because you see the full picture of what’s happening with your loved one. and it can empower them to be able to be allowed to journey through what they’re [00:02:00] journeying through without trying to make you understand.
[00:02:05] This might sound a little odd I don’t know. As I researched Alzheimer’s for the time of caring for my mom early, early on researching and trying to understand the disease. To later when my dad was diagnosed and I was caring for him. I still didn’t grasp all of the things that were being impacted in their brain.
[00:02:28] It wasn’t until I found Deepa Snow that I truly understood how much brain damage was happening. How their vision was impacted, how their hearing was impacted, their ability to process and problem solve. All of those things. When I talked with Talaya, she talked about. Just the feeling that you can have after a treatment. That you’re doing okay for a couple of days. And then wham I am out of nowhere you just have a horrible day. [00:03:00] And if we don’t research and really understand what’s happening. Whether it be from the side effects of the treatment or the full understanding of the disease, we might not grasp how to best support those that were caring for.
[00:03:14] One more example my Aunt Coleen has macular degeneration. And as the disease is progressing. Her vision is obviously getting worse and worse. I was talking to her daughter the other day about the fact that she can actually read. She can pick up a piece of paper. And with effort and time she can read.
[00:03:37] So why can’t she see the pills she dropped on the countertop? It’s so frustrating when we don’t stop to realize that her vision is blotchy. And there’s clear spaces that she can see through. So anything that she can pick up and move around, she can make it right in that spot, that sweet spot, where she can [00:04:00] see, she can read, she can do something with it right there. She can’t move the countertop. She can’t move the floor to see that dirt or whatever it is that fell on the floor. So not really understanding or really thinking about the full disease and the impact of it can impact how we support them. And how much we understand what support they need.
[00:04:24] So number one, educate yourself.
[00:04:27] Number two, the second thing that the person who’s in a season of being cared for, once you to know. Help me preserve my dignity.
[00:04:37] Needing help as hard. You’re losing control of so many things, whether it be because of cancer treatments or ALS, whatever it is, you’re losing control. And one of those things is the ability to preserve your dignity. Because you’re having to ask for help. Many times you’re having to receive help for very [00:05:00] personal things.
[00:05:01] So I want you to stop and think about how do you give them the opportunity to be who they are whenever is possible. And if they can’t handle a task on their own. How are you offering help? One of the things that Teepa Snow says is that we just talk all the time. We are talking constantly when we are trying to help people. And it is important to offer help and to verbalize what you are doing. But simple, quiet verbalization is more helpful than constantly going on and on and on about it. Sometimes when we say, oh my gosh, do you need help with that? Well, let me get that for you. We can do it in a way that actually makes them feel small or inept. And so really making sure that we paid attention to our words.
[00:05:48] Also being able to preserve their dignity, I would say we need to consider their privacy. Just because they aren’t able to do tasks for themselves. It doesn’t mean that they don’t desire privacy. [00:06:00] So having that door closed can be a really simple thing. Going into the restroom with them, help making sure that they’re safe. But then going out, stepping out and closing the door, knocking before we enter, letting them know who we are asking them. Is it okay if I come in? Just remembering to give them some of that privacy?
[00:06:21] Treat them as a valuable person. Even if they have changed and they aren’t the same person that they’ve always been to you before. Remembering to value who they are and honoring them with that. And I think the last part of this one would be including them in conversations, not talking about them or talking around them. But rather including them in a conversation. Even nonverbal people can participate. In the conversation. We don’t know exactly how much they know and understand, but I promise you, most of them understand a lot more than you think that they do. So just being aware that whenever you’re having conversations, that [00:07:00] you include them by calling them by name. Asking them questions or just talking about things with them. Can help to preserve their dignity. So that’s my number two,
[00:07:12] number three. I think the person who is in the season of being cared for. Once you to honor their choices. This can be tough. Decisions that they’re making on medical care or even what medications they want to take, or they want to put up with the side effects of those medications. We love our family member. We want them here as long as possible, but remembering that these are their choices, when they have the cognitive ability to make the choices, we really need to honor those choices. And it might just mean that you need to have a conversation that is full of lots of questions. Because again, like the number one, educating yourself, you might not be fully aware of all of the factors that led to the decision that they’ve [00:08:00] made. So really allowing them to share that decision with you and the why behind it in a conversation. If they feel safe and helps you to truly understand and embrace their decisions. Thinking about where they would like to recover from their illness or receive their treatments. Or live out their life. If they’re at the end of life. Really being able to understand and honor their decisions. Even as simple as down to what they want to wear. What they want to eat.
[00:08:35] My daughter-in-law, Aly, said to me, at one point, ” Rayna, when you get old, I will make sure that you always have your lipstick.” And I thought that was such an amazing thing for her to say to me, because I get up in the morning. I shower. Get dressed, do my hair and put on my makeup because that’s who I am and that’s how I feel most comfortable. When I actually follow my routine and do [00:09:00] that each and every day. So I love that when she said to me, I’ll make sure you always have on your lipstick. So just trying to honor who they are and helping them to feel comfortable. in how they want to dress. And how they want to eat. We knew so much about healthy eating and how it can be supportive of us. But sometimes just having the opportunity to splurge and really enjoy a favorite food can be such a blessing. So I think they would share with us to honor their choices.
[00:09:31] The fourth thing that I think that those, who are in a season of being cared for, that would like us to know is to offer help.” But don’t say if you need anything, let me know. And I got this quote from Kim Hammer’s book, a 100 Acts of Love. She says that is the worst thing you can say to someone. I’m not sure what I would say it was the worst, but she’s very adiment that is a terrible thing to say. But rather be [00:10:00] specific with the kinds of things that you were offering to help with. It helps the person that you’re offering help to to have parameters and an understanding of what it looks like for you to offer help. Running errands, picking up the kids from activities, cleaning the house, getting groceries, offering a meal. There’s so many different things we can do to support those that were caring for. But truly understanding what they need. And communicating that with them can make such a big difference.
[00:10:29] Kim in her Book, a 100 Acts of Love. I wanted to call out a couple of different things. I thought were great ideas. Number 38. ” Call and say, what three things do you need right now?” How powerful. Number one, we probably don’t stop and even think about what we need right now in this moment. And that opens the door for our friend or loved one to answer that question. To take a minute, to stop and think. What do I need right now? Maybe [00:11:00] it’s just, I need milk. Maybe it’s I need someone to walk my dog. I don’t know what that would be, but in that moment,
[00:11:07] To be able to come up with three things can be so helpful. And that kind of dovetails off of number 37. Which was such a great suggestion. She said to place a cooler on your front porch. So when people are dropping off food for you, it doesn’t take you having to be available right then and there to receive it.
[00:11:28] So many times the person that we’re caring for is not necessarily up to it on our schedule. They might be feeling bad. They might be napping. But having that a cooler available to deliver the groceries you picked up for them. Or the meal that you created can be so helpful because it doesn’t force an interaction that maybe isn’t best.
[00:11:47] Number eight. I was “Write to Her.” It says few things say love more than getting a real physical note with a few scribbles on it. And I would so agree with that. In this [00:12:00] day and age, the number one thing that’s in our mailbox is a bill. Never too. It’s junk mail, right? So getting those personal cards, those real notes that just express the love, I think can really bring a lot of encouragement to those that we’re caring for. Even if we’re in the same household. Great suggestion. If you’re a long distance caregiver. But even those that are right there, I think having it in writing allows them to come back to it and revisit it whenever they need that encouragement later.
[00:12:29] So the number five thing that I think that those are in a season of being cared for would tell us is just be with me. My sister broke both of her feet three months ago. What a horrible thing has been, she’s been through so much with surgery and not being able to bear weight, to slowly trying to walk again to a second surgery. There’s just been a lot of times sitting. And she said, when we were talking about this topic, [00:13:00] that the number one thing that was encouraging to her was having people visit and just be with her.
[00:13:07] She said some friends. I brought lunch. Others have come and helped with projects because she was finishing up volunteer jobs that she had, and they were there to help with that. But really just being able to sit and visit was the biggest blessing that she’s had with those that have come to offer help.
[00:13:26] Remember Heather Carter, who was a cancer survivor, she also mentioned that just hanging with her mom. And talking about all the things that they had always talked about that was one of the number one things that she remembered from her cancer battle was just having that time with her mom.
[00:13:43] And. also I was reminded of the times that my dad had visitors. His progression of his disease over for 14 year period meant that he lost. All of his friends by the end, really? But [00:14:00] during that period of time, even those that he didn’t see regularly that came back and visited. I immediately think of one of his ballplayer friends. He and his wife would stop by and visit. It always brought such joy to my dad, to be able to spend time with them. There was a connection there, even if he didn’t necessarily remember why he knew them, it was really a special time. So just being with him. You know, if you’re uncomfortable with somebody who’s older or having dementia issues.
[00:14:31] It can be a little awkward. I don’t know what to talk about. I don’t know what they’re going to remember. Maybe they don’t remember me. I would just say, be there in the moment, you can bring a small gift, something that has to do with something that you had in common and you shared in the past possibly pictures.
[00:14:48] Just bringing up those conversations, those things right here right now that we’re looking at can really still bring a very meaningful conversation. For my dad there’s baseball books. [00:15:00] You could talk baseball anytime. And he might remember you playing with him. He might not, but he could talk baseball with you. So I think finding those topics that they love.
[00:15:09] And joining them there in that moment can still bring joy and create memories for you.
[00:15:19] The last item I want to share with you that people. Who are in a season of being cared for, I believe would want to share with you, is let me have a bad day.
[00:15:31] As a caregiver, we have bad days, right? And we really want people to have room for that have space for that and understand we’re only human we’re doing the best we can. The same thing is true of the person that you were caring for. We all have bad days. And it’s okay for them to have a bad day. It’s great to remind them that we love them. We’re here to support them. Everything’s okay. I found myself reassuring my dad he was safe. [00:16:00] I’m here to help you. Everything’s okay. I felt that that really helped him to feel more secure and to turn that bad day around, but just remember that even if the person you’re caring for appears to be very stubborn, it’s probably based in the fact that they’re feeling so out of control. So many things in times of illness or aging. Rob us of our choices. That those things, which we can control, we often hold very tightly to, and that might be what I’m wearing. What time I’m going to bed. Or even when I’m eating. So just keep that in mind that a bad day is just a bad day. It doesn’t equal a bad life. It doesn’t equal a bad relationship. It might even just be a bad moment. And a bad moment doesn’t have to equal a bad day either. So just allow them to have their emotions and support them in those [00:17:00] emotions, offer them the love and support that they need to possibly move through those emotions, but always remember, they’re just human. And they need care and that’s what you’re there for.
[00:17:11] So caregivers, thank you so much for joining me today. I hope that these six things have helped you to really think about. What it’s like to be the one who’s in a season of needing care.
[00:17:24] I’m going to end it here with a quick review of the six things that I think that the one you’re caring for wants you to know. You need to educate yourself. Help them to preserve their dignity. Honor their choices. Offer help in a very specific way . Be with them. And allow them to have bad days.
[00:17:46] I hope this has been helpful today. Thank you for joining me, remember that a Season of Caring Podcasts has been created for the encouragement of family caregivers. If you have financial, legal or medical questions, be sure to consult your local [00:18:00] professionals and take heart in your season of caring.
[00:18:05] As soon as new caring podcast has been brought to you by the gratitude challenge. Gratitude is a very powerful tool that can help impact you in ways that you don’t even realize. Join me for the Gratitude Challenge by signing up at aseasonofcaring.com/gratitude. It’s never too late to jump into creating a new gratitude habit which will help you to change your focus and help you to see all the things that you have to be thankful for even in this season of caring.
*This transcript is a literal recount of the live recording, please forgive the grammatical errors
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Meet Your Host
Rayna Neises, ACC
Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected.