Hope for living, loving, and caring with no regrets!
Rayna Neises, ACC, host, expands on the concepts Lauren Dykovitz shared regarding her journey in caring for her mother with Early Onset Alzheimer’s. In addition, Rayna shares information on the basics of Alzheimer’s Disease and things you can do:
- Alzheimer’s is a brain disorder that slowly destroys memory and thinking skills and a specific type of dementia.
- Memory loss may not always be the first symptom.
- Alzheimer’s affects thinking and problem-solving.
- Visual perception issues are related to the damage happening within the brain and are a part of Alzheimer’s and dementia.
- Language and the ability to communicate become impaired.
- Most people are diagnosed in the middle stages of Alzheimer’s.
- Utilize the Animal Fluency Screening.
- Testing through your physician is available.
- A heart-healthy diet is also a brain-healthy diet.
- Support and assist with research. Check out Trial Match at Alz.org.
*Transcript is an actual recount of the live conversation
She stood in a storm. And when the wind did not blow her away, she adjusted her sails. This is a quote by Elizabeth Edwards. And when I think of this quote, I think of resilience. Hi, this is Rayna Neises, your host at A Season of Caring Podcast, where there’s hope for living loving and caring with no regrets. Today, we’re going to dig a little deeper into resilience and how resilience can help you in your caregiving season. I love this quote by Elizabeth Edwards. When I really think about caregiving, it just gives me such a vivid picture of what it’s like. She stood in the storm, as a caregiver, we are going to have storms. Those storms are going to happen frequently, and there’s no way to stop them. So we’re going to find ourselves standing in the middle of them. And when the wind does not blow us away. Sometimes, sometimes it will. Sometimes the storm will knock your feet right out from underneath you. And the only choice you’ll have is to get up and just to try again. But when the wind does not blow you away, you can turn, you can turn into that wind and you can use it. You can use the wind to get behind your sails and help move you forward, move you in the direction you want to go. As a person, as a caregiver, as all that you are created to be. Sometimes this season can be so stormy and sometimes it can feel like that wind is just really blowing against us and keeping us from moving in the direction that we want to go. But we stopped to think about how to turn ourselves, to use that wind, to allow the situation to be what it is. Stop trying to fight against it. But actually turn into the wind and allow it to move us forward. It really can change how we handle this caregiving season. And I think that’s why I think of this quote with resilience, because to me, resilience is one of the most important tools that you can have in your toolbox during this caregiving season. The definition of resilience is the capability to recover quickly from difficulties. Don’t you need that. You need it every day. Don’t you? As a caregiver, it never seems like the day goes as planned and so being able to recover, recover quickly from all the things that happens is such an important tool to have. And when we talked with Susan about resilience. She had lots of great ideas of how to really be hands-on and in the midst of this caregiving season with resilience, but I wanted to touch on a few strategies to help you really build your resilience during this caregiving season. And the first one is really getting in touch with your why, when we learned about how we’re wired, we learn to understand how important that WHY is. And all of us have a “‘why, the reason, we have a reason why we embraced this caregiving season, it is a choice. I personally struggled with it a little bit because I can’t imagine not choosing it, but the truth is it is a choice. And so deep within us, there’s a reason. There’s a reason why we feel committed to this caregiving season. Whatever that looks like, whether it be you are a long distance caregiver, or your loved one is in a facility and someone else is doing the hands on piece of the caregiving. This is such an important calling to find how it fits well for your loved one and for you. And so embracing your why. Why does it matter to you? Why is it important that you are your loved one’s advocate, their support, their bookkeeper, their errand runner, whatever it looks like for you in this season of your caregiving. Why is it important that you are a part of this really .Spending some time thinking about that.. I think it’s really connected to our values. And I’ve talked about how our deep values of who we are and how we cherish and honor others can have such an important motivation behind this season, at least it did for me. So stopping and really thinking about here we are at the beginning of 2022 maybe you need to jot down some of the reasons why, what you’re doing is so important in this season of your life. The other thing, when I think about the why is really making sure that you’re not doing things out of guilt, ‘Because I think that does build resentment and eventually regret and a division in the relationship with the person that you are caring for. So really look at if there are things that you’re doing out of guilt, explore why. Why is this something that you’re only doing? Because you would feel guilty if you weren’t and how else can you have those needs met without it being. Because doing those things out of obligation or guilt are going to lead to, an, in eating away of your personal, why of your motivation and your purpose. And so let go of those things and stepping into those things, which you really do feel committed to and called to will really help you to continue to build that resilience so that you can recover quickly and continue through the difficulties of caregiving. The second strategy I wanted us to think a little bit more about is boundaries. Again, these strategies are to help us to reinforce our resilience, that ability to bounce back. And I think it’s really important to stop and think about what boundaries you have. Caregiving can easily overwhelm and overcome your whole life. If you aren’t really careful about your boundaries. Again, when we think about boundaries, we think about drawing a line and making a decision that this is something we’re not willing to do. For me when we first started our caregiving season, one of the boundaries that I drew was showering my dad, you know, because I was so young when my mom was diagnosed and in my early twenties, taking care of my mom, just meant, taking her to the restroom regularly, showering her daily, really just being involved in those very intimate parts of caregiving. So when I thought of stepping into a caregiver role for my dad, immediately, those things came to mind and in our family, we were very modest and. We had very strong boundaries when it came to privacy. So I never, I never seen my dad and his underwear even much less to be put in a position to be in the bathroom and coaching him through the showering process and helping him to shave and all of those things at the point in which I started caregiving for my dad there wasn’t as much hands on of getting in the shower and really, you know, needing to do the shampoo and actually bathing him. But being in that situation with him was very uncomfortable to think about I hadn’t found myself there yet, but as my sister and I were talking about roles and responsibilities, that was one of the things I said, I don’t, I don’t want to shower dad. And so I would say that was a boundary when we first started now, did I never step into that role? No, I had to, there were times that no one else was able to come. The caregiver called in sick and no one else was there. There were times that my dad had an accident and the only way to clean him up was to go ahead and get him in the shower and, really get everything clean from the accident. So as the disease progressed, I found myself in a place where I where I stepped over that boundary, but it wasn’t a consistent thing. It was something that I knew that having someone else do that would help me to spend my time with my dad in a place where I was more comfortable. And we could keep that father-daughter relationship. Um, a little. Well, it wouldn’t be influenced like it would be if I was bathing him. So that was a boundary I laid out again. Boundaries are something that we can choose to allow to let go of maybe for a moment or for a season, or if we’ve reached a place where we think, oh, that’s not as bad as we thought it was going to be. We can change our mind. That’s okay. But I do think it’s important to understand your boundaries when you go into caregiving, because it can be so overwhelming and can be easy to just run right over all of your boundaries. If you aren’t really aware of them, one of the things. I think it’s important during your caregiving season is really taking the time to evaluate how you’re feeling, how things are going. If you’re feeling walked on or taken advantage of, then that’s probably something that you really need to take a look at and think about why. What is making me feel taken advantage of What needs to change in order for me not to feel that way. If I had found myself every weekend having to bathe my dad one of the three days or even one out of every other weekend, I think I would have felt very taken advantage of because the people who were being paid and were expected to be there, to care for him in that way, needed to step up and do their job. So I think just being aware of any time that you’re feeling, some resentment or taken advantage of that that’s the time to really evaluate what’s happening and to think about what boundary is it that you need to draw in order for you to not feel that way. So you need to take a deep breath. It’s okay. To set limits. You need to give your self permission to say, it’s okay to say, I don’t want to do this, or I’m not comfortable with this responsibility. You need to tell the person how you feel, whether that be the person who’s expecting you to do something you’re not comfortable with, or the person that you’re trying to care for. And you’re needing them to be open to something different. You need to express those feelings and let them know how you feel. Communicate really clearly what it is that you’re not comfortable doing. And then you need to make sure that that that’s understood. Have the need met by someone else and ask for them to respect that. I think it’s really important that when you establish a boundary that you don’t leave the person hanging, you don’t, leave for example, it wasn’t an option for me to just leave my dad dirty. Right. I needed to find a different option. I need to find someone else to meet that need. And so when you’re looking at drawing a new boundary, it’s important that you bring that team member in to meet that need, and that you communicate really clearly that the need is going to be met by this person and it’s going to be okay and they’re safe. And all of those things, I think the other thing is then realizing that you will have that boundary walked on a little. Maybe intentionally, maybe unintentionally, but in the relationship that you’ve had up until this point, that behavior has been okay. So finding the person walking up to that boundary, crossing over that boundary, it’s probably a little bit to be expected. So be prepared to take that deep breath again and say, I really appreciate that we have been doing it this way, but remember, I’ve ask such and such to take care of that for you. So let’s just give you another example. If you are caring for an aging parent and you are doing their grocery shopping, especially in this day and age with the virus and concerns of them getting out then possibly you’re regularly doing your grocery shopping and that’s fine. And you’re, you’re good with that, but you’re not good with the daily call. Hey, I need this. Can you run to the store and get it for me? Um, I know of people who have run into this situation and eventually learning to draw that boundary and say, you know, Hey, I go to the grocery store on Wednesdays. So you’re going to need to have your list and you’re going to need to know what you need, because I’m not going to go every day or I’m not going to have time to run by and pick that up for you. So just remembering what solution you’re offering, which is when you’re going to take care of it. And then just drawing that boundary and being able to say the next time they call and they act like it’s an emergency that, I’m really sorry. You might see if the neighbor has that. Or I could do that on Friday, even though that’s not a regular shopping day this week, but I don’t have time today. So really just realizing that those boundaries are going to get pushed a little bit, as you’re beginning to put those down. But again, I think that having good boundaries helps to build that resilience for yourself because it lets go of those little things that might be bothering you, that you might be overlooking or thinking, oh gosh, it’s just not that big of a deal. When we’re looking at a full season of caregiving we’re going to find those little things are going to add up and it does impact our resilience. If we’re feeling resentful, if we’re feeling taken advantage of. So again, some strategies that we’re talking about today is just really kind of getting in touch with your why. Thinking about your boundaries and establishing those boundaries and enforcing those boundaries. And the last one is reframing There was a really interesting study in Harvard in 2013 they talked about reframing how you think about your stress. And in this study, it revealed that when the researchers told the participants that the psychological signs of stress actually prepared them to better cope, they became less anxious and more confident in stressful situation. I think that is so interesting. So in this study, they actually told people that the stressors, they were experiencing the rush of adrenaline, the trembling of the hands, the racing maybe of the thoughts are actually signs that are preparing you to better cope. And when they reframed those stressors, the participants found that they became less anxious and more confidence when they saw their stress response as helpful. So as a result, their actual physical response in their bodies, their hearts and their blood vessels responded in the same way that they would in times of intense Happiness. So that shifted the focus of eliminating that day-to-day pressure that you face by changing the perspective of that realizing that some of these stressors are actually giving us what we need to respond to the situation can help to lower the negative impacts of stress and actually move us into the positives. So reframing is actually the ability to kind of switch the way that we’re perceiving something and really looking at it from a different perspective. And I think reframing can become extremely helpful in many different situations within our caregiving. For example, reframing, missing part of your life for me, again, as I traveled that 220 miles to stay with my dad every weekend for over two years, there were things that I missed on the weekends with my family, and that was difficult at times. And if I always focused on what was happening at the farm with my grandkids or with my friends, the things that I used to participate in that I needed to let go of for that season, if those were the things that I focused on, then I missed the things that I could be doing and seeing where I was at that moment. For example, I love memories on Facebook now because many times things pop up and recently there was a memory that popped up on my Facebook that was of my family, my dad, my Aunt Coleen, my sister, her husband, her son, and my niece, all bowling and add an arcade on a Saturday. It wasn’t because there was anything big going on, but it was because I picked up the phone and said, Hey, let’s get together. Let’s do something fun. And being able to view the time that I had with my dad, as opportunities for us to make new memories, helped me to reframe the reason why I was there. I was there because I was needed. I needed to be there to care for him physically, because he wasn’t safe to be there by himself. But if that’s all that I saw, if that’s the only frame I put on my time with my dad, Then I would’ve missed the memories that I was able to create by having experiences with him that I wouldn’t have thought to have. So thinking of my time with him as an opportunity to do fun things and to spend time with my niece and nephew, that I wouldn’t normally have been able to spend time with or to get to know my aunt at a different level then I had in the past. These were all things that I was able to use that time, that while I was still caring for my dad and I was meeting the needs that he had, and I was still away from my own home and my husband and kids and grandkids, I was able to reframe that time away and really engage in that time and make memories. So my question for you is what might you need to reframe in order to experience the benefits of that, and to build your resilience. So building our resilience is such an important part of our longevity of this caregiving season. And I hope today that as I’ve shared with you, some strategies to reinforce and to really strengthen your resilience, that you can see yourself in the middle of the storm, and you can see yourself standing strong and changing direction to use that storm to help you to move forward, to move into a place of joy and hope, even in the middle of the storm, because I know it’s possible. I know it’s possible to have those things, even as the storm whips around you and tries to overtake you and overcome you. I hope that you found this encouraging today. Thank you for joining me on A Season of Caring Podcasts. And just a reminder, if you have financial, legal or medical questions, be sure to consult your local professionals and take heart in your season of caring.
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