Hope for living, loving, and caring with no regrets!

Self-care is Self-preservation

Episode 93

Rayna Neises, ACC, host, reflects on the thoughts shared during last week’s interview with Tracy Crump.  She expands on the concepts Tracy shared regarding advocacy and the important role it is for family caregivers.  In addition, Rayna shares thoughts on the importance of honor and respect during your caring season.

  • Happy National Family Caregiver Month! Please visit aseasonofcaring.com and download your gifts, “Five R’s of Regret-Free Caregiving” and “Things To Do and Not To Do During Thanksgiving.”
  • Advocate for your needs too. Check-in and ask questions.
  • Always speak with respect and dignity to yourself, others, and the person you are caring for.
  • You are a bystander and need to decide if something your parent is doing is just different from your preference or if it is something that is going to hurt them.
  • Remember to respect your loved one’s privacy, both physically and emotionally.
  • Honoring your loved ones for who they were and still are can be an important part of the process.
  • Provide opportunities for them to do things that bring them joy.
  • Honoring and advocating can be a difficult balance beam to walk.


*Transcript is an actual recount of the live conversation
Rayna Neises: 

Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day, saying, I will try again tomorrow. This is a quote by Mary Anne Radmacher. Courage. When I think of courage, I think of family caregivers. Happy National Family Caregiver Month. Again, I want to talk to you about how important of a job it is that I know you are doing. And I want to say thank you again. I hope that you’ve enjoyed some of the gifts that I’ve been offering each week to you. This week, we are offering the Five RS of Regret-Free Caregiving. And next week you can sign up to receive Things To Do and Not To Do during the week of Thanksgiving. So I hope that you find these resources really helpful. Again, you can visit www.aseasonofcaring.com or follow me on any of the social medias, and you will be able to receive these free resources that I have available for you this month. Welcome to A Season Caring Podcast. This is your host, Rayna Neises, and I’m glad that you were here today. As a family, caregiver, being an advocate is one of your most important hats. And being able to advocate for yourself and your own needs at the same time as advocating for your loved one and their needs is a really tricky balance, but it’s one of those things that I like to talk about often, just to encourage you to keep thinking about it. So that you have on the top of mind both you and they are important to be seen and cared for not neglected. As we think about advocacy, I think oftentimes we immediately jumped to advocating for our loved one, especially in a medical situation. And I would agree that’s one of the first things that comes to mind for me. I know some of the challenges we faced with my dad as he began to lose his ability to really tell us what was going on what hurts and what didn’t hurt. Any of the issues that he might’ve had physically it became more and more challenging. It wasn’t just challenging to learn from him how he was doing it was challenging to get others, to listen to us as well. I think some things to really keep in mind is that we always need to be respectful as we speak up for them to our medical professionals or to anyone who’s caring for them. We need to be prepared with our research and the questions that we have so that we’re able to really clearly articulate our concerns and get information that we might be missing. We need to be willing to ask for help. I remember as Beth Sereth mentioned I’m new at this cause you helped me understand. I think it does just put us in a place of looking for support, which is what we need and getting that person on our team and all of us working together. One of the most important things when we’re thinking of advocating for ourself is really keeping us on the radar. Our needs need to be advocated for. So if we find ourselves in a place where we’re really exhausted. We’re not getting what we need. Then we have to sit down and think about what do I need? What would help? What would make a difference? And really ask for it. Ask the right people, again, do your research, ask the questions, what resources are available that maybe you’ve never thought of before. Find that group that maybe has been there before you and ask them. There’s going to be some great suggestions and both online, groups in Facebook, lots of different places. There are many people who have been in this caregiving season before, you ask everybody is more than willing to help. So then we come down to advocating and really remembering to keep dignity and respect in the picture at all times. And as I was thinking about dignity and respect, I was thinking about how important it is to offer that to even the person whom we are advocating to. Sometimes, our frustration can really well up before we even gotten to the person we’re talking to right now, we’ve often been on a journey of frustration and need and exhaustion. And so all of those things are playing into how we even approach that person. So approaching to ask them to be a part of your team, approaching in a way that offers them the respect that they deserve for their education and their background and all of the things that they are bringing to the relationship, can be really important. We always need to speak with respect and dignity, both to others and to ourselves. As a caregiver, we have to think of how we are respecting ourselves, how we are understanding our own needs and we’re meeting our needs by getting the support that we need. But then there’s the hat of what we think of caring for our loved ones. It’s the respect and dignity we need to have towards the person that we’re caring for. And I think this can be a really difficult line, no matter who it is, but definitely, as we are caring for our aging parents. We hear a lot about that we’re changing roles. We’re parenting our parents. I personally don’t agree with that because our parents were still adults. And when we’re parenting someone, we’re parenting a child, who doesn’t have the wisdom and experience of life that they have as an adult. We do have to do some of the same tasks, but I say it’s morally important to keep that dignity and respect in place for the person that you’re caring for. Because they are an adult and they do deserve that. This can be a really difficult line. I know some of the people that I’ve worked with, as they’re looking at stepping into help support their parents, they’re disagreeing with some of the decisions that their parents were making and it can feel like you need to step in and you need to save the day. When really that’s not your role. I had a conversation with a woman once who found herself in a really difficult place. Her parents were making some decisions that she wasn’t really comfortable with. And as we talk through the situation and I asked more and more questions, I said to her. I think you need to understand that you’re actually a bystander in this situation. Yes. You loved your parents. Yes. You would like to avoid a train wreck and yes, maybe you do see a train coming down the tracks, but that’s all. You’re the one who has to witness the train wreck unless you’re willing to step in and declare them incompetent in order to stop the train. That’s really, really tough. I can’t imagine being in the role of having to declare a parent incompetent. But it definitely happens. And there are times that it needs to happen. But I think oftentimes as their adult children, we feel like they’re making poor decisions long before it really is true that they need our protection. So, stopping to think is this just a preference or is this something that really is going to hurt them? This is one of those times when we talk about parenting, I think we get the opportunity to get the shoe on the other foot. As a parent of adult children, we’re often stepping back and watching those adult children make decisions that we feel like we know better. But we’re not going to step in and take over their life and stop them from making those decisions. We might give our input. We might give our advice. We might try to prevent the train wreck that we see coming, but it’s really not our job. And we do understand how to respect that when we’re talking about our children. I think we have to understand the same thing when we’re talking about our parents. There are lines, which we shouldn’t cross. And understanding those can be tricky. Each individual situation is different. It would be nice if they would listen to us, but if they’re not going to listen, we have to be willing to honor and respect them in that way. Some other areas that we need to really consider as we are caregiving is the respect of privacy, both physically and emotionally. I found a great resource at National Caregivers Library, where they were talking about how to offer honor and respect. And this was a point that they brought out. I often told our caregivers that were working with us in the home that I grew up in a very modest home. The door to my parents’ bedroom was always closed when they were changing clothes or needing personal space. We didn’t go in that room at all. And so I think the same thing was important to be true for my Dad Cognitively there were a lot of things he didn’t understand, but he was definitely more comfortable with that door closed than he was with it open, especially going into the bathroom. Gosh, I needed that door open sometimes just to check on him and make sure he was doing okay. And we did eventually get to a point that he would push it close, but not all the way, which was nice. But making sure that you really can honor their privacy knocking before you enter a closed door. Also thinking along the lines of discussing that confidential information in front of other people, even family members, without permission. If we’re talking about a person who’s cognitively able to make those decisions, It really is their choice to decide whether or not they tell family members exactly what their diagnosis is or how they’re doing a progressive disease. That’s a tough line to walk, but I think it is important again, to honor them. Respect their choices, you know, a lot of times we want to exert our own control over their lives, but we really need to allow them to make as many choices as possible. Allow them to decide what they want to eat, where they want to eat, when they want to eat. What they want to wear, what they want to do with their time. It’s really important. Obviously, again, if we know there’s cognitive problems, offering choices can be the best way to help keep their dignity in place and allow them to have control over what they can control. If a choice seems silly or unimportant to you, you need try and see that maybe this is important to them. And it’s just a difference of opinion. Medication can be a little tricky. We really can’t choose to not take medications at certain levels, but really helping them to navigate why they don’t want to take their medications. Sometimes there’s a physical reason, sometimes there’s a cognitive reason. They don’t understand what the medications for. They don’t feel that they need that medication, but it really is important to help them navigate those solutions. Offering snacks or offering them in a way that’s easier for them to eat can be really important. Bathing is another area. We want them to have dignity and respect in their bathing time. It is absolutely necessary though, that they do get baths. It is important that they bathe, but how important, how often is important? Looking at their medical needs and really understanding that is going to help answer that question for you. Dignity comes in with really addressing the individual, listening to their concerns, understanding, again, maybe if they’re not taking medication, why what’s the hurdle that you can help them overcome. Involve them in as many decisions as possible, ask their opinion, let them know that they’re important and this is still their life. So many times as adult children, we have a tendency to speak for them. We, as a tendency to speak over them, we have a tendency to really just talk and not listen very often. So making sure that we ask them if they have questions, ask their questions of the doctors if they forget to ask themselves or really finding a way to honor that dignity and respect all throughout this. In No Regrets :Hope for Your Caregiving Season I also offered some information on walking that line of honoring, because I think that honoring who they were and who they are to you relationship wise is also a very important piece. I mentioned earlier, parenting the parent, but I think to me, it goes deeper than that. It really is a process of honoring who my parents were to me my whole life. These last few years of their life, there’s only one little section of their life, but they have helped to give me a foundation of my character and my values by raising me the way that they did. So honoring who they are, I think can be a really important piece of that. Sometimes when we think about our relationship with our parents. It hasn’t necessarily grown as much as it needs to throughout our adult lives. If we revert back to what it was like when we lived in their home, then we have a tendency to have some of those same struggles with them. But if we allow ourselves to grow in our relationship and to really consider them as a person and look at what’s important to them and who they are, respect their world. Things are going to be different as they’ve aged, they aren’t able to get out and do as much as they once were. Respect what they are doing, what is important to them. They’ve chosen to keep these activities a part of their life. So as they find challenges, try to keep them a part of their life. For some people it’s going to church, that’s very important for many of the older generation that they’re able to stay engaged in their social groups, going to coffee with their friends, going to workouts go into the gym, those kinds of behaviors. Those are things that they’ve chosen to do with their time. And as they age, offering them the opportunity to continue, those things can be so important. I think sometimes we can look at it and think, oh, it’s not that big a deal he just goes and he just walks around the track. So he doesn’t really need to do that. But when we look at what that benefit is for him, physically as well as emotionally, meets the guys, they all walk around together. Those have a lot of benefit to them. And when you really think what their life has boiled down to there’s often daily activities that they do that don’t seem important to you in your season of life, but that’s because you’re still working. That’s because you still have other responsibilities beyond just being retired and trying to get around as an elderly person. So think about what their basic needs are, think about what brings them joy, and really try to honor those things by providing opportunities for them to do them. It’s really about respecting their world. It’s probably been a long time since you’ve lived with them. And most you haven’t lived with your parents as an adult at all. So at this point, your worlds are very different. Generations are diverse. Their world is important to them, as your world is to you. Your routines and preferences are very much your own and may not align with theirs. It’s a pretty natural place to reach a point where probably it’s not safe for aging parents to drive anymore, but again, honoring them and keeping in mind what they love to do, provide ways for them to continue to engage and do those. I think honoring and advocating can be a really difficult balance beam to walk. You want to advocate for their health by restricting anything that’s not healthy for them, but at the same time, understanding that just being wrapped in a bubble wrap and sitting on the couch, the rest of their life, doesn’t give them purpose either. So helping them to grow old gracefully and give up what needs to be given up at the same time, keep those things which do not need to be given up. I’ve talked before about how physically active my dad was. And one of the things he loved to do was to be active in sports. He was playing softball at the time he was diagnosed with Alzheimer’s. Three times a week was practice all day, Saturday where the games. And oftentimes he would do pickups even on other days. So he was very physically active in softball. He eventually reached a point where he didn’t want to play softball anymore, but I was so thankful that we also had found senior volleyball. Three times a week for two hours, a bunch of senior citizens got together in a gym, drew the cards and played pickup games. And this really ,filled the hole that softball had left for him in that comradery and relationship and physical activity. The problem was as his disease progressed and his age, his skin became very thin. And he wore gloves to protect his skin. And that really was helpful for a period of years. We eventually had to stop playing volleyball when we reached a point where he actually split his finger open playing and didn’t even realize it. And even once the glove was off and he was bleeding pretty significantly, he still didn’t seem to be impacted by the degree of injury. And so that became a point in which we had to have a conversation say, okay, what can we substitute for this activity to keep him physically active, but to keep him healthy. Sometimes I think we have to just find ways to navigate those things. Again, realizing that it’s not about taking it away. It’s about replacing it with something that can keep them safe. So hope that you found some of these tips and ideas helpful today, as I talked through how to advocate, offer honor and respect to your aging parents, and really be able to use the season to be a time of continuing to honor them as you always have and offer them opportunities to be themselves and to enjoy life as much as possible as they age. You can find resources at www.ASeasonofCaring.com/Podcast, to do more reading on your own about advocating and honoring your parents as they age. Thanks again for joining me today. And just a reminder A Season of Caring Podcast is created for the encouragement of family caregivers. If you have financial, legal or medical questions, please consult your local professionals and take heart in your season of caring.

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Meet Your Host

Rayna Neises, ACC

An ICF Certified Coach, Author of No Regrets:  Hope for Your Caregiving Season, Podcaster, & Speaker, offering encouragement, support, and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected.

Rayna Neises, ACC

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