Hope for living, loving and caring with no regrets!
- Local Department of Aging, search your county agencies to find the location near you.
- Support Groups are offered by many different organizations. Alz.org, cancer.org, ALSA.org, and defeatdiabetes.org
- Get the team in place
- See the world through the eyes of your loved one
- A certified coach can come along side you and help you process all the challenges in this season
- Gerontologist can be a great addition to your team
- Alzheimer’s Association and their services- Research, Trial Match, 1-800 24/7 Hotline
- You don’t have to do this alone.
*Transcript is an actual recount of the live conversation
Aly Neises: Hi, thanks for having me.
Rayna Neises: Let’s talk dementia and Alzheimer’s. There’s so much involved in caring for someone, and the numbers are staggering of how many people are suffering from this disease, every 65 seconds someone is diagnosed with Alzheimer’s disease. It is mind boggling when we think about the numbers.
So I’m sure that there are many listeners out there that are dealing with the challenges of caring for a loved one with dementia or Alzheimer’s. Let’s take a look at some things today that we can offer them some hope.
Aly Neises: Yeah, I agree. To know that that number is only going to grow probably exponentially here in the next couple of years is also kind of overwhelming so any, any hope we can give caregivers, I think is going to be positive.
Rayna Neises: It’s one of those things that unfortunately it is something that we’re going to be dealing with. And so equipping ourselves, understanding it better, looking for, finding resources that help us to do that are so important. And Kathy definitely is one of those resources there are nationally, dementia care specialists that help families be able to provide the best care for their family members. And so looking to those experts is one way. Are there other resources you can think of for families that are caring for those with dementia or Alzheimer’s?
Aly Neises:] I think one resource we use a lot at work is the local department of aging, it’s a great way to get a lot of quick and dirty resources. They’re going to talk about, support groups. They’re also going to talk about financial resources if that’s something that is a concern. There’s also things like Meals on Wheels and meals for seniors and activities. All of those things where your local senior citizen meeting places are a great avenue that’s gonna be able to tell you something quick and fast. I know that there’s also other support out there such as support groups.
So. Rayna, do you know where people can find some of the support groups and things like that to help them work through some of those things?
Rayna Neises: Support groups are definitely around and every organization seems to have a support group. The Alzheimer’s Association offers support groups both for people with the disease as well as for their family caregivers so definitely check out Alzheimer’s Association at A l z.org. So if you’re dealing with your loved one, having cancer, cancer.org shows where there are local support groups meeting for you. ALS suffers. There’s ALSA.org. even diabetes at defeatdiabetes.org.
There’s also a national caregiving group that I’m a part of called Nourish for Caregivers, NourishforCaregivers.com is where you can find them. And it is a face to face support group that is available for any family caregivers. So if you’re caring for a child with a disability or a spouse that has had a stroke or you’re dealing with dementia or Alzheimer’s, any of those kinds of things.
Nourish is just open for any family caregivers. And so they meet in local areas throughout the country as well. There are lots of things available. Face to face, but as our day and age is changing, there are lots of opportunities online as well.
I offer through A Season of Caring, a once a month, face to face on zoom or a conference call for anybody who’s in a season of caring that would like to join me and just talk to others in that season. There’s such comfort that comes from realizing you’re not the only one. I think Kathy even said, not one of us knows everything, but all of us together, we really know a lot of how to take care of our loved ones and also how to stay encouraged ourselves.
So there are lots of great resources there as well as Facebook has some support groups available, lots and lots of groups available. If you just search, it’s actually overwhelming how many different ones will come up. And I found as I got into some of those support groups, that they weren’t a very good fit for me.
I didn’t relate to the people or it just wasn’t my environment. But I would just say get out of that group and move on to another one. There are lots of opportunities out there and I know Nourish has some great services on Facebook as well.
Caregiving.com also offers three times a day live chat. It’s not a face to face or even a video conferencing, but just a chatting opportunity with facilitators and other caregivers as well. So there are just, there are millions of opportunities for support, and I think it’s interesting that as caregivers, we oftentimes shy away from those supports.
Aly Neises: No, I agree. I think sometimes as caregivers it’s the last thing we do is to reach out, to ask for support from other people. Taking that moment to extend ourselves even more sometimes feels overwhelming, but like you mentioned, there’s a lot of online ways to access things and with smart phones and tablets and computers and stuff like that, it makes it even easier.
Hey, I got 15 minutes, I’m going to get on Facebook, or, Hey, I got 15 minutes, I’m going to chat with this person just to give me the extra push I need today, or just for somebody to say, Hey, it’s okay. There are other people here that know what it’s like, and it’s okay.
Rayna Neises: I think too, just sharing the journey. It helps us to get outside of ourselves. We begin to care about the other people in our group and understand what they’re going through and in time we can be present in the moment with other people. It helps our own problems to be in perspective a little bit better.
So I love support groups. I didn’t take advantage of that as much whenever I was in my caring season and so I really want to encourage caregivers. It’s interesting those that have are caregivers, survivors. I ask what one thing would you tell people? And they say, get some help. Get the help that you need. Ask for help. Get support. Don’t go through it by yourself. We all have the same thing to say, but so many caregivers in the middle of the season are doing just that. They’re going through it alone.
Aly Neises: Yeah. I also think it’s important that Kathy even mentioned getting a team to work together to help take care of whoever you’re taking care of. To have that teamwork with you. It’s important to understand that may not always be a physical person. It’s just somebody else to lean on that has your back and it’s going to extend you grace and walk through this journey with you.
Rayna Neises: Definitely building that team can make all the difference. And I agree even when they aren’t a caregiver or hands on there with you. They can just offer that breath of fresh air that you need and that encouragement to keep going.
Aly Neises: So one of the things I wanted to talk about that Kathy had mentioned and we have talked about, is that especially with dementia and Alzheimer’s patients walking those family members home is that it is an, especially if you’re doing hands on, caregiving is an all day, every day journey.
I mean in sometimes that journey is an uphill battle that seems impossible. Kathy had mentioned that it takes 36 hours in a 24 hour period to take care of these people. It’s next to impossible. So what kinds of tips would you also provide from your own caregiving experience and from others that you’ve talked to that might help some of our current caregivers, the dementia and Alzheimer’s, loved ones.
Rayna Neises: I think the key is we started with it, don’t do it by yourself. There is more than you can do in a day when you’re caring for someone. That’s why it’s can’t be just you. You have to get support in place. Just going to the grocery store when you have someone that is in later stages of Alzheimer’s becomes such a big challenge because they don’t want to stay with you or they don’t understand what’s happening or you know, it can just be everyday tasks can become very difficult to drag them along, and there’s really no need to do that if you get the team in place that you need. I think taking the opportunity to look at the world through the eyes of the person that you’re caring for, also makes such a big difference.
Sometimes we just see the to do list and we just see the tasks that need to be taken care of instead of actually realizing that we need to think about what it’s like for the person that we’re caring for. And as soon as I stopped and put myself in my dad’s shoes, I always slowed down. I took the time to explain things to him, and I helped him to understand what was happening, which put us both in a much better place.
So I think that’s one of the biggest tips I would offer, is just to take a deep breath, really look at what’s happening, and try to figure out what they’re experiencing and why. Oftentimes we find that people with Alzheimer’s or dementia become combative, and my experience with the combativeness was really, it was more of an aggression because of the frustration and the confusion, and I was able to help alleviate that frustration and confusion, which kept him from becoming angry or frustrated with me. And so not to say that we didn’t have any of those moments, we did, but we had fewer and fewer of those moments when I took the time to step back and really look at what was causing him to be so upset. So I think building your team and then also, you know, really working on seeing the world through their eyes would be the two things I would say make the biggest difference for me is in that season.
Aly Neises: I would be completely helping working with patients and clients that I have in my own personal life. I think you get so much further if you just kind of slowed down for just a little bit, you know, taking that breath and just relaxing. it’s amazing to me how different an, a different approach can be, especially with somebody with dementia.
A gentler tone, a softer tone. It kind of deescalates that situation. So they are less likely to be combative and agitated. If you, like you said, put yourself in their perspective and their point of view, they’re frustrated because they may not be able to express what they need or they don’t know exactly what they need. I think just extending them that grace and understanding that it’s okay, we can work at this together. I think you’re going to get miles and miles and so much more satisfaction out of your day and out of your loved one and much better relationship in the long run. Plus, you’re going to be able to endure that caregiving journey much longer.
We’ve talked many a times about how strong caregiver burnout is and we don’t know how long this journey is going to take, so we need to take it one day at a time and work through these things, but with these little tips and tricks, it’s going to make that journey much more bearable I feel like.
Rayna Neises: it’s funny too, because you always have the to do list things always have to be done, but when you’re able to stay calm and ask for their help, the person you’re caring for, whatever that looks like, however, they’re capable of helping, asking for their help as much as you can. It gets you freed up to do all the other things that need to be done when you’re trying to force that round peg in the square hole, you know, it doesn’t work. And it’s frustrating for both of you. And as you get frustrated, they get more frustrated. It just accelerates. And like you said, taking that deep breath and calming the situation then puts you in a place of being able to move forward and actually accomplish all the things you need to do because they’re more cooperative.
Especially as the disease continues to progress, they sleep more. They’re not as active and agile, and so there’s plenty of time to do the to dos when you have the support that you need and you’re able to keep your loved one in your corner working together versus kind of fighting against each other.
Aly Neises: I agree completely. So other than support groups and like specialists like Kathy, are there other people that you would recommend to be those support people for you? Like were there people that you also found solace in that maybe weren’t right there beside you, but we’re able to help you with this caregiving journey?
Rayna Neises: I’m a certified coach and a lot of people don’t know what that means, but, I’ve been through a lot of training. Coaching is really designed to walk alongside us and to really give us space to hear our own hearts and problem solve for ourselves.
Oftentimes when we go to a loved one, they have an opinion and that opinion is really strong and well, you shouldn’t do this and you need to do it that way, and you get a lot of the shoulds and woulds and I would if I were doing it, that kind of thing. And that can be really hard to hear when you’re in the trenches. And what I love about a coach is a person that you know, gives you that space to just explain what’s happening, but also just ask those questions that helps you to start thinking about really and truly what is important to you? Where is your heart and how can you make the steps to move towards what your heart really is about?
And so for me, you know, throughout my season I had coaches that came alongside me and gave me that space to problem solve if I needed to, to just vent if I needed to but to really be able to get in touch with where I was, how I was doing, and then, you know, really make the plan to make a change if I needed to.
So there are certified coaches out there and all different areas. Some specialize in caregiving. Some are just life coaches that help you kind of balance all of life and in this sin sandwich situation, which most of us find ourselves in caring for that aging parent at the same time as working and caring for our own kids or grandkids. They can really help you find, not balance because it’s really not able to balance everything, but it’s really integrating your most important things into your life. And letting you really sit in, be intentional about what is most important to me and what does that look like for me to live this life in a way that I’m living with those priorities in mind.
So I would really encourage you, if you’re interested in learning more about coaching, on my website, you can set up a time to met, but there are definitely other coaches around as well that can offer great suggestions and opportunities to, get the support that you need to make the decisions are going to help both you and your loved one.
Also, I think working with professionals, gerontologists, you know, oftentimes really finding that professional doctor that specializes in aging help you to really understand what’s happening physically and how to meet those needs for your loved have one. I think finding that medical help as well is really helpful in this season of caring.
Aly Neises: I think you’re right. I think it’s amazing to me that when women are pregnant, we go to an OB. When you have children, you usually find a pediatrician. But it seems that as we get older, it’s, especially when you’re having complications with aging, like dementia or Alzheimer’s, is that we don’t seek those professionals, that that’s their specialty.
You know, you, if you have cancer, you go to an oncologist. That’s what they specialize in. So I think you’re exactly right. Like to seek people that his is their job to just study geriatrics and how the best to handle some of the difficult times with geriatrics, with medicine and natural ways and alternatives. And I love that there is becoming more of a trend for alternatives as well. I’m excited to see where that’s going to grow cause like we talked about this, dementia and Alzheimer’s is definitely going to grow more diagnoses and more people that are dealing with that on day in, day out.
So I think it’s exciting that there is going to be new medicine and new, a new push for new things to help people deal with this because it’s definitely a difficult, very difficult disease, for patients but also, caregivers.
Rayna Neises: It’s amazing as I volunteer with Alzheimer’s Association understanding that we haven’t had a new drug in like 16 years is mind boggling. There has been nothing approved by the FDA to impact this disease. The encouraging news is we are just pushing forward with tons of new research and we are finding things that we have never been successful with before. And so there are actually two drugs right now in the process of being approved or hopefully being approved with the FDA to address Alzheimer’s and dementia. It’s so important as the research continues so one thing that’s a total rabbit trail on this is just encouraging people to reach out even to the Alzheimer’s Association.
There are so many trials available that if you and your family members can become a part in that, we will learn more. We will be able to move faster forward in taking care of not only the symptoms of this disease, which is all the drugs are doing right now is handling symptoms, but actually finding the source of the problem.
And being able to move forward in preventing the disease. The mission of the Alzheimer’s Association is a world with No Alzheimer’s or other Dementias. And so we’re really moving forward to reaching that mission is so important, but it can’t be done without people being willing to be a part of trials.
There are non drug trials, there are diet trials, there are all kinds of different things available. And, Alz.org you can actually go in and set up a profile and learn what trials you might qualify for because like all trials, we need healthy people as well as people who are struggling with the disease so just a little plug for that.
Aly Neises: That’s amazing. I didn’t realize that there were things like that. As a nursing professional, I know that there hasn’t been new drugs in that field, which mind boggles me already because like we’ve talked about, with baby boomers getting older, I think we’re going to see more and more people having dementia and Alzheimer’s and that big umbrella of memory cognitive issues. It’s crazy to think that finding other ways to try to slow the growth and try to figure out ways how to manage this better and prevent, it would be awesome. Like that’s what we would all hope for.
Rayna Neises: For sure. And I think one of the things that also helped me a little bit in perspective as I learned about the Alzheimer’s association is that the Alzheimer’s association has only been around for 30 years. So research dedicated to Alzheimer’s has is so young in comparison to other diseases that the progress that we’re making, especially right now, seems to be, you know, explosive in comparison to what it was.
Because we really think about the fact that actually Alzheimer’s was discovered in 1918 it’s been around for a very long time, but we’ve not been researching it. We’ve not been really spending the time and energy discover what’s happening. It was just, back in the old days, no one was diagnosed with Alzheimer’s they were just all old and crazy, right? Everybody had a crazy all grandma or that crazy old grandpa that ran around town or whatever. It’s been around forever. As an Association, the Alzheimer’s Association is the number one private funder of research, in the world, and they partner all over the world to help in the research area. And so it’s very important that we continue that research. And like I said, that we’re a part of doing that because without volunteers, they don’t have anybody to really find out more about it.
So the trial match is a great thing that’s available at Alz.org one other thing that the Alzheimer’s association offers that I didn’t realize until I started working with them as a 24/7 hotline. Actually, my dad, after my mom passed away, my dad volunteered and he was one of the hotline answers in Kansas City for the Association. And so he would take calls of other caregivers who were just needing somebody to listen to them. And the Alzheimer’s Association through the years has progressed to the point that there’s now a call center with trained people who are really able to listen to what’s going on in the moment offer suggestions, offer support, encouragement, as well as local referrals.
So there’s lots of different things they can connect you with the local office or just 24 seven 365 days a year they’re there available. And so another great resource for that support that we need as caregivers.
Aly Neises: I had no idea that they did all of that or had all of those resources available. That’s amazing. And to know that you could just pick up the phone and be like. Hey, I need some help, and somebody on the other line is that only going to help you work through some of that? They can maybe give you a professional or something that can help you with all of that.
I think the most important thing that our listeners need to understand from Kathy’s podcast as well as from listening to us, you don’t have to do this alone. That is the most important thing. This. It’s a very, it can be a very isolating journey as we’ve talked about. It can be very long and tiresome, but you don’t have to do that journey alone, whether it’s a support group or a professional like Kathy or a hotline.
I mean, that’s amazing. There are ways to get assistance and there are ways to get support so you can walk your parents all the way home. I mean, that’s our end goal right.
Rayna Neises: Definitely. You know, when we think about this journey, there’s so many things that are heavy and hard, but we all know that two can carry more than one, and three can carry more than two. So bringing those members in, whatever it looks like family members, like support group, just all of those things.
We just can’t do this alone. No matter who we’re caring for, no matter how long it’s going to last. Getting the support in place is the most important thing. Oftentimes the research shows that the caree can outlive the person they’re caring for with some of these dementias and Alzheimer’s because of the stress of trying to carry it all on your own.
It doesn’t have to be that way. You definitely can find the help that you need, and I hope that today listeners, this has been encouraging to you. I’m giving you some things to explore and look at. As, I’ve shared a lot about the Alzheimer’s Association, there are other associations for whatever things you are dealing with, as far as American cancer society, those kinds of things.
So I’m sure that there, they have lots of support available as well. So if you’re not struggling with, Alzheimer’s or dementia definitely look for support. It’s out there. There are all kinds of opportunities. We to be willing to raise our hand and say, I want to know what’s available and give it a try.
Be willing to just try. Cause sometimes that can feel hard to do, with all the other things you have in your life that it worth it. Even as simple as Facebook, you know, just find something. Take that first step if you need to talk to me, we can schedule a 30 minute conversation that we can just explore some options and see where you are.
If working together would be a good fit for you. I would love to have that opportunity to talk with you. You can learn more about Nourish and Alzheimer’s Association at their websites as well as my services. We’ve loved to have you get the support that you need.
Thank you for joining us today on the Season of Caring Podcast. Just a reminder, this podcast is designed to support family caregivers. If you have medical, legal, or financial questions, be sure to seek out your local professionals.
Thanks again for joining me, Aly. It’s been great to talk about all these opportunities to find support and we will catch you next time.
Your turn, share your thoughts . . .
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