After Caring for Both Parents With Alzheimer's, She Has "No Regrets"

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That's 800-937-9673. Thank you for caring. Welcome back to Hope for the Caregiver.

This is Peter Rosenberger. This is the show for you as a family caregiver. We're glad to have you with us. If you want to be a part of the show, 877-655-6755, this segment is brought to you by MyPillow, which by the way, I'm going to get a new pillow topper and some more sheets from them and use the promo code CAREGIVER and get a big discount.

I love these products and you can wash them and so forth in the dryer because I don't like to have pillows be transported around whether I'm having to go to a hospital or some type of other place and you just feel like, yeah, it's just, I want everything clean and these things you can just throw in the washer and they're great and the pillow toppers are amazing. It's a great product and I want you to take advantage of promo code CAREGIVER and get a discount off. We're joined today by a woman who's written a new book and she lost both of her parents to Alzheimer's 20 years apart. She cared for her dad. I think it was her mother first and then her father and it clearly profoundly affected her and her name is Raina Nicest. She is speaking into the lives of fellow caregivers who are going through very similar things. I'm just thrilled to have her on the show today. So Raina, welcome to the show. Thank you, Peter.

It's great to be here. Tell us a little bit about the journey that you had as a caregiver. Was it your mother that you cared for first? Yes, unfortunately, I was only 16 years old when my mom was diagnosed with Alzheimer's. So she was 53 and, you know, as a teenager that's a really difficult thing.

I think it's hard to even understand your parents are human, right? At that age you're just so focused on your own world and so that diagnosis was really difficult, obviously, to even understand and she became non-verbal within three to four years of her diagnosis. She lived 12 years with the disease at home with my dad. It's her primary caregiver and me trying to step in and offer that support anytime that I could. Did she become, we've had, we've talked a lot about early onset here and did she become violent through this process? Just I'm asking because a lot of the folks that we dealt with with early onset that's what happened. Right, I understand that and we were blessed as a family.

Neither of my parents were very violent. My mom was just a really quiet type personality anyway but no she did not, she didn't, she wasn't able to speak so she wasn't able to communicate but she really didn't get too frustrated. She seemed to just be real easy to deal with. We had a lot of things as a caregiver that you, you know, bathing and feeding but we were blessed and that she never was incontinent so we just kind of kept her on a regular schedule and those types of things seemed to be easy for us to handle with her. You know that's amazing given the horrificness of this disease and so many caregiving experiences that you learn to be grateful for the small things.

Well it's not a small thing with incontinence and so forth. That is a, that speaks volumes of you guys that you learn to be grateful for what you had not what be miserable about what you lost and I know that was very painful to go through that. You got her squared away and as you took care of her and almost, you know, what then within 10 years after that your father was diagnosed?

Right, we were about seven years after her passing that my dad had his diagnosis of Alzheimer's and he lived with the disease for 14 years. So when he got that diagnosis that had to have been a kick in the gut for all of you guys. You've just been through this and then you turn right around just when you're catching your breath really and then you, then you get this diagnosis. Was he, was he symptomatic before that?

Did you start to see it? Were you, were you thinking, oh my gosh he's, he's going to go too, he's going to have this too or did it just kind of come up real suddenly or how did that work? No, actually my dad and I owned a franchise together, a Sylvan Learning Center and I was the hands-on, he was the accountant and had all the business experience and one day I was in my office and he gave me a call and he just said, Raina, I'm kind of, I'm worried and I'm like, what, what's going on? He said, I just, I don't think that my memory is like it should be and I said, oh dad, you know, with mom we're just a lot more sensitive to that.

I'm sure you're fine but go to the doctor, just go to the doctor and let them do the tests and, and we'll, we'll see what comes out and I honestly, I didn't think that there was a problem. My dad was really sharp and I think what he noticed, a lot of people don't realize with Alzheimer's, it's not just memory, it's processing, it's the ability to problem solve and, and he was really sharp in that area and I think that's what he started to see was that he wasn't able to figure things out like he used to and so he was concerned for himself and unfortunately, you know, the test results came back with some concerns. He actually started with mild cognitive impairment as the initial diagnosis and then 50% of the people with that go on into Alzheimer's and he was one of those that did and it was, it was devastating for our family. When you walk through that journey all the way to the cemetery with your father and now both parents, you've done this and you brought this considerable amount of experience that you've had, very different experiences but, but you know that when you had both of them together and that have gone through this even though they went through it some years separately and you wanted to reach out to your fellow caregivers going through similar circumstances and this book came out, A Season of Caring, which I love the title by the way, that's, that's kind of your whole thrust what you do with reaching out to help mentor people along through this process of a season of caring and I've used that term here on the show because there are seasons we will be doing this. Some seasons are a lot longer, in my case, you know, I'm 35 years into this but and that's quite a long season. It's kind of like winter out here in Montana. We just got five inches of snow last week. Wow.

Winter, the season of winter seems very, very long out here. We call it sprinter because we're, it was kind of weird by the way, John and John is with us too, Raina, a longtime producer of the show, John Butler and he is with this as well but it's, I went out and took pictures yesterday of the horses and there was so much snow in the morning but afternoon a lot of it had melted in the sunlight and the green grass was underneath it because I was going to have to mow the grass this weekend and then I looked at the horses at all, it's all green right where I am and in the backdrop you could see all the frosted trees so it was like, it was like a mullet, you know, a business in the front, hardy in the back kind of thing but it's a, no, I kid but tell us about a season of caring. So, when did this kind of percolate in your brain of think, okay, this is something I want to take this experience I've had, you're obviously, are you a teacher? I was a teacher and now I'm a certified coach and so I was actually teaching whenever my dad got to a point that he needed the 24-hour care and so I didn't renew my contract and went and traveled to take care of him the last four and a half years of his life so. What all did you teach?

I have a reading specialist so I spent some time in the fourth grade classroom, I did PE and then I also worked with gifted and reading specialists so I have a diverse background. Indeed, but you brought all of those skills to bear and and equip other people to deal with this and so you launched this thing called a season of caring, talk a little bit about this. So, a season of caring is my coaching practice, actually the name of the book is no regrets hope for your caregiving season and you know after we my sister and I teamed together to help keep my dad in his home all the way until his passing we had a great team of people that were around us multiple times I heard people say you need to share your story of how you as a family were able to care for him in the home all the way to the end and so you know I really as I as I thought about why it was different why people were so surprised by that I just really realized that I was able to bury my dad with no regrets and I think that's a powerful thing to do and the only reason why I felt like I could say that was because throughout the process I stopped and I reflected and I really thought about what how things were going what I was doing for him what he needed maybe that was different than what was happening and I just really spent the time making those adjustments in that season and I don't know that you can ever go through all of life saying I don't regret anything ever but if you stop in the moment and you change it then you don't have to have a regret and so you know I really felt like the way that we were able to support our my parents through that time of their lives and in that time of my life at the same time supporting them but also having my own life and being able to you know maintain my marriage and and relationships and things like that was something that I really wanted to share with people and so I've written the book to help support others for them just to see get some ideas of things that worked for us as a family and offer some ideas and how to provide self-care for yourself even as you're caring for your loved ones. I love that title no regrets and I'm sorry I got that wrong I was looking at a season of caring and I'm yeah you know this is what happens when you have all this head and so little brain. John no comments about that it's a just keep my mouth you know but John and I talk about that a lot we this is our eighth anniversary of this show is this week and and I was just mentally kind of indexing a lot of the shows that we've talked about about regrets and and people that are at the end of their caregiving and they're at the grave and they're just with clenched fists they have so many regrets at the you know resentments and so forth and I think that's a beautiful way that you've been able to express this. John what are your thoughts on that? Well about because we know it's we talk about this a lot you know we know it's going to end at a grave and hopefully it's you know not our own because that is that's a real that's that would be the biggest regret I think you know not not being able to be there for the whole for the whole journey and beyond that you know I know I agree with you that's a that is that's a good good title a good title because that is something we deal with in a pretty rough way so. Well it is and and no regrets doesn't imply there weren't tears and there weren't painful places and I love the way you just say you know if you get a chance to make amends or make adjustments along the journey then you're able to to effectively navigate through this thing and you're learning you're going to make mistakes I mean that no regrets doesn't mean no mistakes it just means that okay I didn't leave anything unaddressed that needed to be addressed and dealt with and that is my hope and my prayer for for myself and my fellow caregivers is that we can navigate this thing all the way through without being tortured because I I have I have seen caregivers and I want you to talk about some that come to your mind who are literally torturing themselves long after the grass has grown over the grave and and I know that you've encountered people like this you can't help it if you're doing this and doing this and uh with with fellow caregivers talk a little bit about that and what are some things maybe you would say to those individuals who are really putting themselves through the through the grinder long after the cemetery you know I think you can offer yourself forgiveness at any point and regrets are really about the things that you wish you had done and I think we have to realize that we only can do what we know to do in the moment and hindsight's always 20 20 we all know that and so in the process I guess what I'm always encouraging people to think about is how can you be intentional how can you do the best you can do right now with what you have and if that's what you did then there shouldn't be regret you know if there are things that you wish you had done differently you can forgive yourself for that and I know that your loved one will forgive you too so I think just being able to really get down to what it is that the root of it and really think about is it just the emotion that you're allowing yourself to run off with or is it really something that was you know that you wish you could have done differently that you had the ability to do something different and you could have thank you for speaking to that because that is that is something that it's just a really rough thing that that we all deal with and we were been speaking on guilt pretty much this entire show and it's something that it can be crippling and and it's the ability to forgive oneself which is not saying it's okay it's just you know like taking your hands off of somebody else's throat in this case your own and so is there is there anything else that you would speak to as far as guilt is concerned since we've been talking about that today and again I think the key of both guilt and regrets is really just being intentional and so in this caregiving season where you are right here right now what are you choosing if something's not working you can always make another choice I think sometimes we have a tendency to think that we make one choice and that's it we have to go that direction permanently but really the truth is you can make a different choice if it's not working for your loved one if it's not working for you you can make a different choice and having that understanding allows us to let go of guilt and say okay so that didn't work but what can I do that will work and that's what works but what can I do that will work and I think the only way we can be intentional is by being reflective having quiet time to ourselves to have that self-inventory and say how am I doing what's going well what's not going well what do I need what might I need to do differently in order to get what I need who do I need to ask help from all of those things are going to help us put us in a place where we can feel healthier therefore we don't have to deal with guilt or regret yeah yeah and like the idea of of being well just deliberation of being deliberate about things can can be rather freeing even though it's rather difficult sometimes but no one well put absolutely I think we do have Peter back by the way that was that was a little glitch in the matrix sorry about that John uh I took the I took the red pill but I I um I have plenty of things in my life that I regret doing and causing um but I I really respond well to what you just said um living intentionally and not haphazardly because I live for many years in my caring journey I was just reacting all the time and I'm learning now to just slow down and respond and deal with it as it is right here and right now and your your words are are beautiful Raina and the book is called No Regrets where's the best place for people to go to find you it's available in all major retailers um June 1st it'll be in bookstores kindle versions available today that's right give me your website real quick at aseasonofcaring.com aseasonofcaring.com Raina Nisus and I am so thrilled that you came on the show today Raina thank you so very much for being a part of this this is Peter Rosenberger we'll be right back have you ever struggled to trust God when lousy things happen to you I'm Gracie Rosenberger and in 1983 I experienced a horrific car accident leading to 80 surgeries and both legs amputated I questioned why God allowed something so brutal to happen to me but over time my questions changed and I discovered courage to trust God that understanding along with an appreciation for quality prosthetic limbs led me to establish standing with hope for more than a dozen years we've been working with the government of Ghana and West Africa equipping and training local workers to build and maintain quality prosthetic limbs for their own people on a regular basis we purchase and ship equipment and supplies and with the help of inmates in a Tennessee prison we also recycle parts from donated limbs all of this is to point others to Christ the source of my hope and strength please visit standingwithhope.com to learn more and participate in lifting others up that's standingwithhope.com I'm Gracie and I am standing with hope