Hope for living, loving and caring with no regrets!
- The demands of caring
- The kinds of support out there
- How to find the help you need
- Avoiding developig dementia yourself
- The finanacial impact of the disease
*Transcript is an actual recount of the live conversation
She’s a former critical care trauma, ER nurse of 47 years, wife of over 50 years, avid horsewoman who enjoys riding three to four times a week, loves reading and teaching classes for dementia certification care all over Kansas and surrounding States. She’s also a nursing instructor for five colleges and relaxes at the gun love his music, mostly new age, and has six rescue cats.
Welcome, Kathy. It’s great to have you here today.
Kathy Adkins: Thank you. Rayna it’s a joy to be here.
Rayna Neises: So let’s talk a bit about what you do to help families that have, someone with dementia family.
Kathy Adkins: Well, there’s a book that was published quite a long time ago back in the 90s and the title of the book was the 36 hour day, which describes about how many hours you need in a day to take care of someone that’s experiencing cognitive decline and the changes to be prepared for to take place in your life trying to care for someone like that. Used to be families had many children and the children when things started deteriorating kind of tag team with each other to take over and that has been declining since the 1950s. Some families have only had one child, some had two and as you can imagine, that’s kind of the hot potato of, well, who’s going to take care of mom now?
And, It gets to be quite a stress. I usually, when I’m doing my classes, I talk about a family and let’s say the husband gets dementia and he’s working and so is the wives, so I ask how much has their income been reduced? And most people saying, well, 50% thank you again. Who’s going to take care of him? Oh, is wife so how much is their income been reduced? 100% yeah.
It’s a, that’s an expensive, it’s a stressful, it’s a very emotional, draining time and life. People feel like they should do everything they can for their loved one to take care of them. No one wants to face the reality of placing their loved one in one of those dreaded facilities. We have some very, very fine places, and in truth, towards the end, oftentimes that’s the only recourse is to let a facility take over or, you probably won’t survive as the caretaker. It’s just that demanding, but there’s lots of books out there on dementias and what causes it and how to take care of it, different types of it.
And is it Lewy body? Is it Parkinson? Is it frontal? Temporal here’s the thing. They’re all kind of the same in the respect. They all need care and it’s very demanding. And how a person with dementia is today, there’s no guarantee of how there’ll be tomorrow. So when the families are trying to stumble their way through trying to figure out how to get them to eat to bath, toileting becomes an issue and so forth.
I step in, work with the family, assess the situation, and say, this is where this person is today and this is our best course down this road now. Now let’s see how far we can get. How many days can go by before we need to make an adjustment or look at a detour because it will change, it’s a disease of decline, so we expect those changes.
If you think things are just going to go along swimmingly, or you can care for them like the book says, that’s not realistic. The Alzheimer’s association, I’m community educator for them has wonderful teaching. They have a 24 hour hotline, but that’s someone on a phone that’s not in the situation to look at it.
When I tell you something over the phone, you perceive it one way I perceive in a different way. And the reality of this is your reality, where you’re at, not what I’m perceiving. So that’s where the advantage comes in of being in the home, as answering the questions that come up. Mmm. Trying to make the best of each day till we get to the eventual end, which is when we, becomes final and we finally lose them, which can take the books say from four to eight years. In reality, it can be from four to 20 years.
Rayna Neises: [00:05:30] I have personal experience as well. I lost both of my parents to Alzheimer’s. And so my mom, that was one of the things that I thought interesting when I heard those statistics. My mom was actually diagnosed at 53 and passed away at 65, broke all of the odds one as far as early stage, early age. 12 years in the home with my dad and then my dad, live for with the disease as well. you’re right, it’s, it definitely varies by the person. And, and how the, the progresses is very unique. the way that that my mom struggled, the progression of her disease was significantly different than my dad’s.
And so having that. on, eyes on person there to support and offer suggestions and ideas sounds like a great service. Do you find families are looking for that or how do they find you?
Kathy Adkins:Yeah. Mainly it’s word of mouth. And it’s kind of like drinking from a fire hose. I was certified a couple of years ago and I didn’t say too much or do too much for the first six or eight months. And then when the word started getting out, I started getting lots of calls. could you please come assess this situation and so forth.
And I’m out in a lot of different business groups, so the word spreads. I’m the only person certified at my level in the state of Kansas. There’s a lot more people than I can take care of and one of these days I’ll probably have to try to find someone to come on board and, and team up with me and maybe ease things over to them and I’ll go back into retirement at some point.
Rayna Neises: [00:07:06] That sounds like a great dream, but you’re doing such important work. I know the families really appreciate having your support, and we know with the statistics, we’re only getting more that are developing and it’s so difficult for the families. Like you said, there’s that 36 hour day has, Gives you it’s like, but living with it day in and day out is a whole different situation. And having that team of family and having those people outside the family, I think is one of the things. Definitely that helps. it as a family. there’s so much in that, that sometimes we don’t see it as clearly as someone coming from the outside.
Kathy Adkins:I just met with a family last week and the, the wife, the mother ha is an early stages and she was quite cognizant. The family was all together. They live in Anthony, but they were here together in Wichita to daughter’s house. And I talked to her with the rest of the family around, and the father had been leaving her alone at home in Anthony and driving to Wichita, which is, what, 60 some odd miles away.
And leaving her alone, which is getting to the point where it’s not safe, but of course was not going to listen to the children. So I’m, that outside voice comes in and said, you know, it’s really come to the point where we’re going to have to be a little more careful and you to have to find someone maybe to come over and stay in and watch over.
You can’t just, it’d be like leaving a child alone, being that far away. You wouldn’t do that. And when I say it, it sounds different than his children’s saying it.
Rayna Neises: Definitely. I imagine a lot of family relationships can be a struggle in helping to support the relationships that have been wounded or aren’t great, throughout the family. be, you know, children that didn’t get along with their parents that are now stepping into that caring role or , you know, the, the siblings along together. I imagine that’s a big part of your job as well.
Kathy Adkins: Stress in caregivers and families is incredible. I’m the main caregiver, be they the husband or wife or the child? Usually the daughter. although I’ve seen some sons take admirable care of their parents and so forth, but. you, you no longer have a life of your own. You can’t do routine things like just run to the grocery store or go enjoy church or go out and have coffee with your friends or so forth.
And it can lead to all kinds of things, including drug use and smoking, overeating, depression, anxiety. It leads to a whole host of things. And there are support groups. I’m very, very supportive of people being in a support group. No one can tell you what it’s like to go through the situation, like people who are in that situation and no one of us know all the answers, but each of us know a little piece of that answer so families can get connected with support groups to help. That’s, that’s the saving grace right
Rayna Neises:I agree. So listeners, if you’re in this caring season and you’re not finding that support, we want to encourage you to look for it. It’s out there. There’s all kinds of different opportunities to find support groups. That would be a good fit for you so that you aren’t taking this journey alone. I’m making sure that you’re bringing family members in, whether they’re local or not.
Having that support as someone to talk to and who understands the situation with you. as well as bringing professionals in, you just can’t replace that. So, such an important point. We’ve got to get the support for each other so we don’t have all those negative, place whenever we’re not dealing with the stress because it is definitely very stressful. So being a person who has had both parents that have had Alzheimer’s, it’s always interesting to latest on what we can do to avoid that.Any on that end?
Kathy Adkins: Oh, absolutely, absolutely. I am not connected with the company, but, I’ve done my research. 23 and me, he has a health component, so DNA with a health component and come to find out they’ve been doing it a lot longer than Ancestry has, they actually can find the variance if you’re prone to, all Parkinson’s, dementia early and late. And it’s like heart disease if you have the risk factors and the genetic history for heart disease, then it behooves you to modify all your risk factors. And if you don’t have them, you can still invite the dementias in your life with your lifestyle. But at least you have some control over the situation.
Back in the 18 hundreds, the normal American ate about four pounds of sugar a year. Today, people consume over 400 pounds of sugar a year, in the form of sugar is in everything and carbohydrates. We’re a high carbohydrates society and all carbs break to sugar. Your pancreas is always putting out insulin to try to balance the sugar you take in.
The brain only works off of glucose. So you got an organ in your body fighting to keep the glucose under control. You’re taking in more the organ that sends out the insulin is fighting to put out more, and your brain needs the gasoline and the fuel. Do everything we can to reduce the consumption of sugar and carbohydrates. There isn’t any one perfect diet out there. Moderation is the best thing. Look at the contaminants that we’re taking in through our soil and our air on a and our water on a daily basis. We don’t have a lot of control over that, but we can try to control what we’re putting in our mouth the quality of that.
Okay. Simple things like sleep. We pride ourselves on being able to get things done on three or four or five hours. Sleep well, your brain clears toxins while you’re asleep. And that’s like the cleaning crew coming in. So how do you think you can run the factory 20 hours a day and not let the crew cleaning crew come in and do their job?
That’s one simple things like water. We are not hydrated. Well, because water isn’t fizzy. It isn’t sweet. It isn’t bubbly. It isn’t pretty. But it’s what you were 70-75% of. And there’s been many instances for people just getting their adequate intake of water, cleared a major brain fog and let them function better. Helping to get your body back into balance and moving. Yeah. We are not designed to stay still. There’s a saying about God didn’t intend for horses or men to be down for very long.
Either way, it’s not good. Keeping, moving, keeping everything working, keeping those joints flexible, keeping your balance good, keeps you from falls. It’s a multipronged process, but it’s all doable, but you do have to give up some things.
Rayna Neises: [00:14:35] So avoiding that is definitely a lifestyle choice. And we hear it over and over again with all heart disease and, Yeah. all of those things hearing that we can control or at least get a jump on by being wise with our intake, getting the exercise, the water that we need and sleep.
We hear that over and over again. As caregivers, oftentimes that sounds overwhelming because it feels like we don’t have control to of those things in our life because we’re trying to meet the needs of someone else in our life, but integrate those things that are going to be help us be as healthy is something we can do when we are intentional with what we do.
Kathy Adkins: Absolutely.
Rayna Neises: One more thing that we’re going to visit about was the financial impact. I again having been on this journey, caregivers that come having no idea all the things that needed to be done to take care of my dad, it was definitely a significant, investment financially and.
He had planned, well, we were blessed to have longterm care insurance, which, which made a difference for him. But tell me a little more about that impact on the families that you work with.
Kathy Adkins:People who are in their thirties and forties least like to think about things like longterm care, and that’s when they exactly have to start thinking about longterm care. The insurance companies have started to figure out 20 years ago how expensive this can get, and there were many, many companies in longterm care.
Some of them have since gone out of business, so they’re very careful about who they take because this is a huge financial burden. The statistics say that within the next 30 years, the dementias alone can cripple our healthcare system. So people who have the ability to get longterm care insurance, that’s going to take care of them.
These problems need to do so. People don’t realize that they’re looking at, it has to be someone in a facility. They’re looking at anywhere from five to $9,000 a month. Where do you think that’s going to come from? Well, we have a house. Okay, well that’s not going to last very long. When you look at people who last 12, 14, 16 years with dementia it was look at $9,000 a month, times 10 years.
You know that house money is not going to last very long. Okay, so getting a longterm care insurance, keeping a longterm care insurance, working with someone who can help keep you healthy. If you have to have a health monitor or a health coach, somebody who can help keep you on track. Investing in things like a membership maybe to the YMCA, where you can get a huge variety of different people working with you with consulting and movement and exercise and diet.
You’ve got to use all those things and you can still live a normal life. But the financial burden, the families can’t take care of that. If there’s hundreds of people we hear about ’em all the time. I had a police department call me the Wichita police department call me about a month ago, a very sad, and it was like seven o’clock. They were at this home. The husband had died. The wife had dementia. The daughter was in Hawaii. The only relative, they had nowhere to take her except the homeless shelter. There was nothing they could do to get her into the hospital and the homeless shelters. The last place she wants someone alone with dementia, and they called me trying to figure out what they could do.
I was able to make some emergency phone calls to people that I know and, begged and borrowed. Could they do an emergency admission for a couple of days to give her daughter time to get back here from Hawaii? And that finally workout. But as I was talking to the police officer, Mmm. He said, this is not the first time this happened.
This is just the first time I’ve had a phone number of somebody to call. And he said, and I’ll be calling again, or we’ll be calling again. And I’m doing first responder training, through the corporation that I was taught by to try to help firefighters, EMT. Some police officers understand because they’re going to work with these situations the same as the rest of the public.
But the, the back to the financial, no one has that kind of money unless your name that was to be bill Gates or so forth. So you’ve got to think about the future in those terms.
Rayna Neises: Definitely one of those issues of none of us want to face our humanness, much less having this type of a disease that is so scary. And, Devastating. And so I think we just want to avoid it just like we do. we’re here how to take care of our bodies and that, that will help us to avoid these things.
We kind of avoid that. We avoid thinking about the financial burden that’s involved in the care. And, unfortunately, avoidance doesn’t change it. It just sets us up to really struggle even more than we have to. So great words of wisdom, earlier the better, to get that insurance, like you said, the opportunity to get it is different today than it was even 10 years ago, because so many companies realize they can’t afford to sell it.
Some good advice around different ways to be prepared to take on that financial burden. All of us are going to age and some of us are going to need more care than others, but all of us are going to need care and having that nest egg that allows us to have choices and what that care looks like can be irreplaceable.
Kathy, thanks so much. You had some great tidbits of information for our listeners. I know that they feel more equipped to understand how dementia impacts their families and the things to consider. after listening to our podcast today, how could our listeners get in touch with you?
Kathy Adkins: I’m very easy to get ahold of. Probably the easiest. I’m on Facebook for one with Kathy Adkins, Dementia Specialist. You can find me through Facebook. You can go to my website, DementiaSpecialist.info. Dementia Specialists, all one word dot info. My phone number is out there for everyone. Please feel free to share my phone number with anyone you please. I’m more than willing to help in any aspect of I can. It doesn’t mean that I’m signing you to a contract, but I’m certainly going to do what I can to improve your situation before we part ways.
Rayna Neises: Thank you so much. I love your heart for families that are supporting their loved one through this. Such a difficult, devastating disease and I just really appreciate what you’re doing.
[00:21:23] Thanks listeners for joining us today. I hope that you’re walking away with some new information and that you will get in contact with Kathy if you have questions or concerns that she can help your family with.
Just a reminder, this podcast is intended for encouragement of family caregivers. If you have medical, legal, or financial questions, consult your local professional. Thanks. Have a great day.
*Transcript is an actual recount of the live conversation
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