When Caregiving Calls & Demands Our Attention
00:01:00 – 00:05:04
This episode is brought to you by Caregiver Chronicles, an eight-week online course from diagnosis through hospice for more information, use the link in the show notes.
Welcome to Fading Memories a supportive podcast for those caring for a loved one with memory loss.
Before we get in the show. I thought I’d give you some details on some of the courses that you will receive with caregiver chronicles. It starts from the very beginning with the diagnosis. But you will also get horses on a healthy lifestyle. Navigating medical professionals understanding medication legal matters insurance dealing with durable medical equipment when a caregiver is needed finding one placement family dynamics and challenges and conflict home health hospice and planning for your loved one’s transition. There are three available one lesson which includes two private consultations eight lessons which include four private consultations and their weekly live group invite or all sixteen lessons and private bonus six private consultations and the weekly live group. I know from personal experience that the more you know about handling this disease the better the outcome will be for everyone so i urge you to check them out and let them know that you learned about them from Fading Memories podcast. I am excited to introduce my guest today. Aaron Blight is the author of the new book when caregiving calls guidance. As you care for a parent spouse or aging relative which was released on. October thirteenth of twenty-twenty. Aaron is passionate about supporting caregivers which is rooted in his personal experience as a family caregiver. His professional background as the owner of a large home care company and as the leader at the centers for medicare and Medicaid services and from his studies as caregiving as a phenomenon of social science. So thank you for joining me today, Aaron.
Thanks for inviting me. It’s great to be with you. My experience and i know a lot of caregivers have the experience that caregiving doesn’t call it sort of kicks down the door and demands your attention. So what was the inspiration for the book and that’ll hopefully latest into how we can be more prepared when caregiving actually calls. My book was the inspiration for for writing. It really came. From twenty years of being a caregiver working with caregivers and studying caregiving as a phenomenon of social science my my own caregiving experience. Kind of came like a door being beaten down over twenty years ago when my mother-in-law was diagnosed with a brain tumor she was relatively young. She was only fifty nine years old. I’m twenty nine at the time. My wife was a little bit older than me. But we had young children. And i had a job at the centers for medicare and medicaid services writing national health care policy for elderly and disabled people. But i didn’t have a clue what it meant to be elderly or disabled until my brother-in-law’s cancer emerged out of nowhere. At our lives were offended and that led me to change in my career i left. Cms became a home. Healthcare company owner and then studied caregiving. As i said from a learning standpoint. And i’ve been in contact with many many families that have gone through the caregiving experience. And so i felt compelled to write this book to be honest with you because i know that families need help when caregiving enters the picture and so that was what what prompted me to write the book so yeah twenty nine.
00:05:04 – 00:10:00
Small children at home caregiving didn’t call. You kind of sounds kind of punched you guys right in the head which is a pretty common occurrence. So what should we be doing to help. Educate the greater population on the understand to help them understand. That seventy percent of us are going to need care before we pass away. So i think the other thirty percent that don’t care probably leave early or you know like my grandfather die. Suddenly and immediately. So what should the rest of us be doing. So that we don’t get punched in the head with caregiving. How it can just call us politely. Well i think that one of the things about caregiving is that it is everywhere. I mean as you just said seventy percent of us will be needing caregiving at some point in our lives A recent study that came out from the aarp and the national alliance for caregiving said that this was a twenty twenty study said that over fifty million americans have provided caregiving sistance and the last year lao at about one fifth of the population. And when you think about those numbers it’s a staggering number of people that are involved in caregiving. But the thing is you don’t really think about it until it’s right there upon it’s easy. It’s easy to just kind of say. Yeah well i know that eventually there might be a need for caregiving. I’ve got other things to focus on worry about. And so oftentimes families are not prepared for the not. Just the physical. But also the emotional the relationship realities that caregiving presents to them and it can be really difficult to wrap your head around. Yeah i can relate a little bit with the relationship change. I suspected that my mom did not recognize me as the daughter. Mostly because i lost a tremendous amount of weight. So i didn’t look like my previous self when you have a broken brain. Yeah that’s a people that knew me. Barely recognize me so that that didn’t surprise me. She thought i was her best friend so it was difficult they were days. It was difficult when i had to refer to my data’s or your husband or whatever whenever i did refer to him as dad. She was completely confused. No idea who. I was talking about and there were times when it’s like. Oh you know be really nice if i could just you know talk about. My dad doesn’t matter if she acknowledged you know him or not. But yet. So i can. You don’t think about those kind of and i’m not sure what the right word is but you don’t think about those changes and how they affect you because there are times even with my grandmother who we talked about before offline who’s one hundred and two and a half because she doesn’t hear well she doesn’t always exactly remember who she’s talking to just kind of frustrating and sometimes when i refer to dad she gets confused and then i’m like really you’re bringing this fine. So why why. Can i not talk to you about your oldest son slash my dad so it is it is. It is one of those things that people don’t realize you know and it’s just another one of those added thousand paper cuts that does make caregiving more emotionally challenging. So i can relate to that a little bit -solutely especially families that have loved ones with alzheimer’s disease in particular as you were describing it can be just heart wrenching to watch their loss of self occur slowly and insidiously over time one of the things that i think. And i’m not. I’m not an alzheimer’s expert. I’m a generalist when it comes to caregiving But i think that one of the most important tips that alzheimer’s caregivers can remember. Is you know when when your loved one starts to exhibit signs of alternate reality and they’re thinking and seeing things that aren’t there you know there’s there’s there’s this almost natural inclination to to try to argue and say well. No that’s not that’s not. That’s not happening right now. Stop you know. And oftentimes that just increases the agitation and the conflict with your loved one and in stead of taking that approach and trying to dispute. What is real.
00:10:02 – 00:15:02
It actually can be much more manageable to just go with it and to say oh you see your your sister out there on the swing. What’s what’s she saying. You know how she doing. What does he what she wearing today. Or whatever and by just kind of going with by joining them in their reality. You’re actually demonstrating a certain level of dignity and respect for their lived experience. And you’re avoiding a lot of the potential conflict frustration. That could be happening. That could occur just by trying to argue about what is real. And what’s not real. I mean it’s it’s their lived experience in your honoring that. I’m glad that you mentioned that. It’s actually a dignified way of communicating or being with them. That was one of my struggles with my mom. She did not have hallucinations until close to the end and thankfully i was pretty certain. That was what was happening. She talk about some woman and shoes pointing up way up in the top of a very large tree. And i was like. I’m not really sure what she’s talking about. And she’s pointing at that tree. And i knew her. Visual processing was just horrific in so i don’t i don’t remember what i said but i didn’t argue with her just turned to go with it and it was better for me emotionally and mentally like it was less mentally exhausting. If i did just go with it. But i had to. I had to kind of make it like creative exercise but it took me too long because it felt really disrespectful to be like. Oh yeah okay. Like one story from very close to the end of her life when she was telling me that her brothers were normal people. Now i’m like ooh really glad to hear that you know. How are they not normal before which was not really the best question because she just sort of said something totally different. I was trying to engage her where she was at. And it is a walk harder than it sounds and for me it was. It felt disrespectful. And when i kinda got finally got over that which was way too late in her journey. It was much easier for both of us. So i’m glad you mentioned that because you always hear that. And it’s all just meet them in their reality mike. Okay well that’s not as easy as sound so it’s not and if you haven’t been around people with dementia before your natural inclination is to just try to correct them and try to bring them back to this moment here and now that you’re experiencing and It it’s a it’s a very It sounds like a very easy suggestion. But it’s a very impactful suggestion. If you’re able to do it and it can make a big difference in terms of your caregiving for someone who has alzheimer’s. I know of a a man that was Had been a world war two pilot and he was hospitalized and had alzheimer’s disease and was extremely agitated was kind of flailing about in the bed and was not responding to the nurses and he was talking about something in the air with the pilots being a pilot and eventually the one of the nurses started talking him through as if he was in world war. Two and You know up there in the air over germany or france or whatever the case was and he eventually calmed down and it was it was that act of just meeting him where he was that allowed him to to be Calmer and more subdued and they could work with that much better. That’s a feat. Not being a huge history buff. I’m not sure. I might have figured out what he was doing. I’m not sure. I could pull out enough history to make it. Maybe would have made sense. Even if i was all off on my facts. But that’s that kudos to that nurse. I have a question it kind of relates to what we’re discussing. I know a caregiver who. She’s taking care of her mom and apparently the stepdad has passed away recently and occasionally mom remembers that she hasn’t seen the husband for a period of time with my mom. I never reminded her that my dad was gonna. Her husband was gone and we did the same thing with my maternal grandmother who had vascular dementia. Because it’s just cruel but this gal is not as far along as my mom was when my dad died or or my grandmother. When she was having issues she would. My grandmother would actually get very upset and say you know you’re should be talking to my aunt. Your dad’s left. We left me for another woman and this other caregiver and fortunately the woman goes into the grieving process.
00:15:02 – 00:20:14
And she’s confused. She doesn’t think people have explained to her. What happened to her husband. You know you have any suggestions for that kind of scenario. And i’m hoping i’m describing it well enough. Then it makes sense. ’cause sound a little disconnected there for a little bit again. I’m not an alzheimer’s expert but I do know enough about it that you know. Each person has their own individual experiences and their individual context and memories and In the book. I talk about a study that was done by paul. Hager who was an australian learning theorist and they examined direct care aides. Who were working in. Dementia care unit. Where all of the of a nursing facility. So all of the residents there had alzheimer’s disease and had their own. Alternate reality is that they were living with us. They were all co located in this space and the aides were there to try to manage the situation and even though they didn’t have any formal training in alzheimer’s disease or in the medical progression of the disease or anything like that they develop their own way of managing their environment and helping those residents through a process that they called showing guessing and trying showing guessing trying and by just in other words trial and error practice. You got you got to figure out what works with each individual person and by practicing by going through that the conversation multiple times with that person who has dementia and trying different things. You’re gonna realize and discover how to best manage the situation so showing guessing trying is to me something that i like to share with people because you don’t necessarily know what it’s going to work you know. In one case it might be perfectly okay to remind the loved one that yes You know your husband has passed away but for another person that might just bring them to tears or create all kinds of confusion. So maybe that’s not the right answer for that person. So i think when you approach caregiving that way and realize there’s no manual that’s going to give you all of the answers for your loved one. But through that process of trial and error through a guessing trying tech techniques and tactics will emerge and will allow you to be more effective as a caregiver. I used to say early on after he passed away and we moved her to memory care within two weeks. Which sounds really terrible. It was going to be terrible no matter when we did it so you would just. You should have had to move multiple times if we didn’t do it that close to him passing away. And when i whenever i would visit and take her out you know most my listeners know that we went and watched kids and she would say does my husband know where i’m at and this is where i learned that if i said yes. Mom dad knows where we’re going. That didn’t answer the question. She literally asked me that once. It was about every twenty five feet his from her room to halfway to the door to the door to the outside door to the car. She must asked me like five times. It was like do. I really want to take her out. When i finally figured out that saying dad knew where we were did not answer her question. And i would say oh. Yeah chuck knows where we’re out. That helped a lot that cut back on the the question significantly mostly because i was actually finally answering it for her. But you know. Sometimes she’d say why i need to some. She mentioned her husband. Well did i see him. Oh no i think he’s at rotary meeting. Which might add was a rotarian. My husband and i are two or i would say now. Where the heck is he today and she’d say something like well i don’t know blah. She’s always get a little sarcastic about him. It was kind of their days. It was funny but there was occasionally ones like you know we just have like the positive memories please and but i never ever reminded her that he was gone because i knew it. My grandmother had gone through. There was one day we were in the car coming back from her doctor. I swear i don. I think most families experiences. But i don’t know why like serious conversations have to happen in trapped spaces like a car but we’re driving we’re at a stop light thankfully and she said it was really sad when your father passed away and i was like what came out of the blue the blue and i said yeah but he didn’t stick long time and so i think it was better.
00:20:14 – 00:25:01
She goes ah and then she started talking about the trees. Well okay that. That conversation is now done which i was really glad we’re actually stopped because she’s shocked me so bad that i don’t know what would have done if i was actually navigating through traffic. So that’s kind of what i did. I always just basically said or shoot asked me. Have you seen him lately while no i think he’s with and i would name his best friend. I think they went out to lunch or i. You know. I always found something for him to be doing which was always the things he normally did. And that always seemed to work. So i might suggest that grid strategy. I didn’t want to like deal with the tears and crying. And i knew that would be really mean so i will suggest that to this gal that that’s what i did and maybe she might wanna try it. Her mom seems to be. I don’t wanna use the word triggered because that’s kind of a loaded word these days but she seems she seems to be triggered by sad scenes in movies or scary. You know it’s like she has to be really careful what they watch on. Tv which is interesting. My mom didn’t really connect with tv for so long that i never had to worry about that. So what other suggestions do you have for. Generally anybody that ends up caregiving. ’cause it’s a struggle no matter what it’s worse when you’re dealing with somebody that is forgetting things in forgetting how to do their daily living and eventually my mom forgot how to eat which was the very very end so i didn’t have to deal with that too much but i know your book is It’s in each chapter is a different type of topic. so The book has eighteen chapters and each chapter covers something that is really relatable and inherent in caregiving And the choppers include conversation roles are oh l. e. s. relationship. Meaning like you know your relationship with your your loved one the care receiver family Understanding that you know you are providing care to your your loved one but there are other family members that might be in the picture as well. time stress work body mind home independents loneliness emotion providers skills rewards faith and step so one thing that i think is really important to understand and appreciate for family caregivers is that caregiving will change your relationship with your loved one and a lot of people. And that’s i think for me personally was was almost revelatory and to when i was taking when our mother when my mother-in-law moved in with us after her brain tumor was diagnosed and she had brain surgery. I had a really hard time with her being in our home at and she was supposed to be in our home for just two weeks to recover from brain surgery and move out back to her own place famous last words. Yeah she she stayed in our home for almost two years. she went through two brain surgeries chemotherapy. While she was in her home she lived for five and a half years after her original diagnosis but we were constantly. Even after she moved out we were constantly going over to her house and helping her during that time that she was in our home. I really struggled with that on the one hand. I wanted her to be in our home. I wanted to be there for her and help. Her and i knew that she needed the help. But at the same time resented her presence in our home. And i felt so conflicted about it and you know there was always this sort of internal struggle that i was having with her being there because it affected our whole family in so many different There were all of the physical disruptions to our lives that were we were always taking care of her meeting her needs but there also was you know some of the things that were happening with our her grandchildren our children. You know she was mothering. Our children instead of grandma during our children and things like that that could be very challenging and we had to put our life on hold to take care of her and her cancer.
00:25:02 – 00:30:25
And so. I didn’t really fully appreciate and understand some of the things that i was struggling with years later when i was studying caregiving and i came across some research in applied gerontology from rhonda montgomery and carl caused law. They are sociologists. Supply gerontologist study aging and they’re specialists in caregiving. Their search is internationally known but they spent their careers studying family caregivers and they developed something called family caregiver. Identity theory have not heard of that ad it basically describes family caregiving as a series of based transitions that occur over time due to changes in the caregiving context. And so what. That means really. Is that if you think about your. Let’s just say that you’re taking you. You’ve talked about Your mom right. So you’re taking care of your mother you’ve always had historically a mother daughter relationship before any caregiving right and that that mother daughter relationship is unique. There is nobody like your mother and your life and it goes all the way back to your birth you know. She changed her diapers. She watched you walk. She took you to school she. She cheer she was a cheerleader. For you you know she. She supported you and watched her be the mob for so long. And there’s a lot of meaning in that relationship between a mother daughter and the way that you interact with. Your mother is informed and embedded within that that historic relationship that you have with her You probably behave or or say things that might be different around your mother than other people you know like your mother versus your boss. You’re not going to be the same person as you know with your mom. Compared to your boss and historic relationship has pre dated any caregiving is true. And now when your your mother who cared for you and raised you now requires care from you. Things will be different between the two of you now. You are doing things for your mother that you never did for your discussion with her is different from any type of interaction that you had with her before and she starts to potentially see you differently. And so these the introduction of caregiving tasks can shape your perception of who you are in that relationship and you start to wonder. Well who who am i now to my mother and my my her daughter or am i her best friend or am i just a caregiver am i. Just steer to you know Feed her and wiper bottom and you know. Take her to medical appointments. Is that all that. I am now to my mom. And when caregivers they struggle with this type of thing And that creates something that montgomery kozlowski call an identity conflict. Where now the family caregiver. In addition to the new tasks of they’re performing but can be stressful and overwhelming. They have the the emotional challenge of navigating type of relationship that didn’t exist before with their mother and that can be just as hard to to to manage so family caregivers. You’re not even realizing this just happening. And a huge part of why you struggle and the way to kind of to get through that is to really either one of three ways that you that you could sort of manage that situation that that identity conflict one is to offload some of the caregiving tasks. They’re causing the greatest stress to other care providers. So you you might bring in home care providers or you have other family members that start sharing in the caregiving responsibilities or you look at care facilities so that those things that are causing you such difficulty can be taken care of by someone else. A second way to Cognitively process than come to terms with it is to incorporate caregiving into your definition of your family role as a daughter so in other words you start to think differently about what it means to be a daughter when your mother is ninety and has alzheimer’s so now you realize okay.
00:30:25 – 00:35:02
You’re basically saying to yourself my mom. She’s always been my mom but now that she’s ninety. She’s has alzheimer’s. Our relationship is different and being daughter to a ninety year. Old woman with alzheimer’s means that i have to caregiving tasks. And and i’m okay with that. I accept that i am going to do it. Because that’s just what it means to be a daughter at this stage of her life and the other way to deal with it is to basically recast your role in the relationship to where now you you’re saying okay. You know historically been a daughter that’s been my mother and we’ve had this certain type of relationship. But now that she’s ninety and she has alzheimer’s daughter as much anymore. I’m gonna. I’m gonna be a caregiver and i’m going to accept that role. It’s a new role a role that i didn’t have before in this relationship with her. But i’m okay with this role now. Because i want to honor the historic relationship that i’ve had with her and i want to be there for her and that means being a caregiver for her today and i accept that. And i’m okay with it and so in all three of these different ways that you might respond that’s easier said than done it. How but they all require a shift in your thinking you have to start thinking a little bit differently about who you are in this relationship. And what does your mother need and the caregivers that are able to transition through that and really be okay with it. Those are the ones that are are able to really the most successful at being a carryover. Why can comment a little bit. I was much more comfortable with the heart of the caregiving. That i did. Whereas i provided the out external stimulation little adventures. That brought her joy. That was much easier for me even though physically it was not easy but when it came to and and there was because in the last ten months of her life she i felt like i was constantly chasing new struggles new issues. She was very very combative. She did not want help. And i knew helping in when even when she needed it could result in in getting scratched. She was really good at scratching and drawing blood on caregivers. She did it on. My husband was not gonna let her do it to me. And so i very purposely tried to not put myself in the position where i would upset her by helping which was super frustrating and then being the On the receiving end of either smack or scratching or just very physical anger mean. Fortunately she wasn’t real strong. But you know you don’t want arrests. Like i literally had her her wrists in my hands because she was literally like trying really hard to claw the daylights out of me. I think this was back in february of this year. Twenty twenty so she was. She was really ticked off at me. And i’m not i. I kind of know what i did that triggered her. But you know. I just looked said i am not going to allow you to hurt me and that i made it worse but it got to the point where i just. I had to like end the visit but when we went out she actually remembered me as the person who would take her and do fun things because there was one visit where i had just gotten home from a trip like at one o’clock that morning so i was very tired and i knew that bean tired or stressed or not feeling well separate from how i felt with her. If i was tired and stressed or not feeling well. And i was with her. It could easily devolve into something negative. So i thought to be smart and i brought a nice snack and it happened to me my wedding anniversary so i brought my wedding album that we could look through and we just stayed in the courtyard of of the community. She lived in. And when i got there. She’s like. Oh where are we going today. And i was like. Oh dear like one now.
00:35:02 – 00:40:07
I felt guilty. That i hadn’t planned on taking her anywhere because i i. I knew that i was tired. And you know when we’re tired it’s really easy to get frustrated much sooner and and not not deal with things that are easy to deal with worn out tired. Fortunately the snack and the looking at the wedding pictures entertained her so that was fine but i. I was amazed that she remembered when she saw me. She remembered me as a person who took her out. So that so i. I made that a goal that we always went and did things which is of course a lot more difficult in the winter. Kids aren’t playing in the park. We went once went to mcdonald’s where they have a really big place base. There was a one kid in the whole restaurant. there was challenging but that that part Carrying for her. Was i wanna say easier. It was mentally easier. It was easier to accept that part of that role. But when you had when. I had to help her navigate eating which of course she didn’t want help so you couldn’t feed her or if you try to. We had a horrible time a new year’s eve she. She was pushing the food off the plate. Not intentionally it was just the week before we. They’d had little hamburgers and she kinda struggled with it because we all know how sometimes all the layers of slide apart and it’s a little bit challenging so they had the best hamburgers but they were really good and they weren’t real big. They’re almost near slightly bigger than a slider. They were perfect for a woman in of her age and heard the where she was at with the disease. But i didn’t want her to struggle so the following week what i was doing i should back up half a step is. I finally got smart. I started listening to guest. Who were saying. you know. You’re going for an hour to go for two hours. Two and a half hours. You need to go twice a week for an hour instead of once a week for two and i there was a lot of logical acceptable reasons that i was doing. I was doing but it wasn’t working anymore. So i finally on december twenty third twenty nineteen. I wrapped her gift. I picked her up. I put her in. My car drove around to the front of the community to the assisted living part of a residence and took a heraldic car. We had the nicest christmas lunch. And it’s over on the assisted living side. They had huge trees decorations. It was lovely. And i was literally there for about an hour and we had a great time and i thought you know what i am not going to push this any further and it was the nicest day unfortunately the following week on december thirtieth. She fell jetted up with stitches right above her. I if you draw a straight line down you end up in the pelvic region the and so. I didn’t obviously do anything extraordinary with her that day because she’d been in the hospital. She got stitches enough drama. This will not be well if i try to have a quote unquote nice lunch with her. So i went the next day. Which was new year’s eve fully expecting to do the same thing we had done the week before. Have a nice lunch some desert. You know we sat by the fire. I mean it should have been lovely. Was the biggest nightmare. I do know now why she had a lot of pain. She had a fractured pelvis. Still upset oh from from all switch. Obviously they did not find until she fell and broke her leg. And they’re like oh. There’s a healing fractured her pelvis. And i i had to like really throb back the anger because obviously the er doctor was not the problem. I really wanted to throttle her general physician and everybody else involved the week before or the month before. Because it’s like. I kept telling you i see like night had massive massive pain walking and doug now we know why now that it’s too late to deal with so yeah. I have a little issue with israel but we went. So she’s pushing food off the edge of the plate just because that happens and i kept trying to help which pissed off and once like a noodle landed on the table then we had to spend three minutes you know. Oc dean everything on the table. It was like oh my god. I literally sobbed all the way home. It was the most horrible horrible day and of course that was also the data. Somebody put an offer on. My house was a lovely way to end twenty nineteen but when so when i was the provider of entertainment i could deal with that when i was the person who had to help with the eating in the toilet eating and all that stuff i had not accepted that role i guess as well as i should have and it came a little bit more rapidly than i was expecting.
00:40:07 – 00:45:08
So i’m with you people on that one. I know how hard that is. Well and you know it’s not that one person who can do certain caregiving tasks is better than another person. Who finds those tasks difficult. I mean we all have our own strengths and weaknesses. We have our own life circumstances and other responsibilities and whereas one family member might be in a better position to handle things than another. That’s that’s okay. I think that sometimes you feel guilty that you can’t do this or that or or you feel frustrated and it’s important for caregivers to realize that you know you’re human too and these are extraordinary circumstances that you’re trying to manage and you you need to focus on caring for yourself as well as carrying for your loved one because when you’re in a better place you’re going to be more effective as a caregiver for for your loved one. It’s an excellent point. So your book on your book chapter on time. What what specifically do you talk about in that chapter because that one piqued my interest is something. I’m not sure we’ve discussed much on this podcast before the the chapter on time to start off the chopper talk a little bit about a little experience that i had kind of about the time i was writing the book. My my daughter was In high school parking lot and a another kid at the high school back into her car and as a result of that her car had damage. And i had to. Now get involved with my daughter’s car. And i had to spend a lot of time that week. Taking her car to the shop getting the repair on handling the insurance claim and driving my daughter to and from all of her activities. Because that’s what she needed and so that little accident a little fender in the high school parking lot was an encroachment on my time it was an inconvenience but it was something that i just had to absorb if i wanted my daughter to do the things she needed to do and if i wanted to get her back on the road and so if you think about it we have interruptions like that interruptions to our time constantly throughout the day in the month caregiving caregiving is an encroachment on your time you have to realize going into caregiving that you’re going to have things like that little fender bender that will pop up because your loved one has needs and those needs will arrive arise at inconvenient for you always you might have to drop. You might have to drop what you’re doing to take care of something for your loved one or you know like you were talking about just a few minutes ago allocating your time for your visits your mother being a two hour visit or one or visit so their strategies that you can Come up with to manage your caregiving time. More effectively to be more proactive in caregiving and less reactive. And as you approach your use of time and care giving a little bit more proactively you’re gonna you’re gonna be happier. You’re going to be more effective in all of the dimensions of your life. Another aspect of time that i talk about caregiving is I like to use the analogy of marathon. And if you think about a marathon. I’ve i’ve i have not run the marathon. I’ve run half marathons haven’t even gotten that far. We’re cyclists okay. But you know when you have a marathon. It’s a long race right and it’s it’s difficult in its strenuous and arduous. And all of those things but you have you have a predetermined finish line. You know that if you could just get to that finish line you’ll be okay at caregiving is almost like running a marathon without a predetermined finish line. You don’t know how long you’re going to be caregiving. Nobody really knows how long this period of caregiving is going to last. Not not you not your loved one not the doctors and so you keep running and running and running and and you think metaphor i could just turn the corner and see the finish line.
00:45:08 – 00:50:14
Maybe things will be okay. But there’s no finish line in sight. And so that. Kind of protracted nature of caregiving is another thing. That can make it very difficult because you can’t schedule a completion date and when you can’t schedule a completion date it. You can’t schedule other things that would happen after completion like family vacation for example lot of caregivers feel like they can’t take vacation because their loved one needs them. They can’t even schedule a night out to eat dinner. Maybe because their loved one needs them and so those are some of the types of things that are discussed in the time chapter. Good good examples. And i know i know. I’ve talked to caregivers on kind of both sides of the spectrum one that brings in quite a bit of help because they won’t survive without it and this whole pandemic has really upended that solution and other caregivers who have had struggles finding Reliable help and then just decide. And i personally think erroneously that it’s just easier to do everything themselves and when they’re this one particular person who is on top of my mind when their loved one is does now gone. This one person looks like they just look completely wrung out probably older than they are and i worry you know because now they’re going through the grieving process which is difficult and we still haven’t been able to have the type of funerals that we’re accustomed to like. My dad had a huge thing. We still haven’t had anything for my mom which is very frustrating. So it’s it’s a difficult balance. And sometimes i remember the first night we left my parents. My dad was on hospice with twenty four hour caregivers and my husband and i had to pull out of the driveway. Drive twenty miles home and pray to god. Nothing happened till the next day. Which thankfully nothing dramatic happened. But it was. I remember very vividly being very similar to like the first time you leave your kid with a non family babysitter or my my daughter. Because i’m the oldest of all the grandkids on both sides. So i had cousins. That can take care of her. That were much younger than me. And i don’t remember my daughter having non-family babysitters but still when you have to leave your baby with somebody and go away and not you know they always joke. In like sitcoms pay does a dinner for the two of us. We’re not going to talk about the kid in the end up sitting here and silent like really hard and it’s for us well. My mom was in memory care so that helped. But i also knew her. Mom live two to ninety one now. My grandmother did not develop vascular dementia until her mid to late seventies. My mom passed away at seventy seven. So the timeline was different. We assume that she would live into her eighties. Which i think she might have made it into the early eighties. She hadn’t fallen a broken leg. That was the last you know that was that. Was the final straw. Her body just could not deal with any more damage or injuries. That was it. She was da and it wasn’t surprised. Because i remember i remember. You know i’ve told guests like yourself. I’m ready for this journey to be over. It is actually very difficult to remember a time when she didn’t have memory issues or a time when i didn’t have to worry about what was going on with her because of her memory issues so i was. I felt oh. I’m ready for this journey. Be over and when it happened. I was not ready was the biggest shock. It was not entirely surprising that she passed away a little bit. But my reaction to not being ready was that was a huge shock because it was like what you know like this is the best thing for herds. You’re really is like this. Has been a very long journey so i kind of feel like we overestimated the time line tremendously and that helped a little bit because we knew it was going to be here and years and then it wasn’t so many years so i mean had been a lot of years up until that point but the really hard years were not as long so. I don’t know if that helps people think about you know you thought it was two weeks and ended up two years and i’m not good at math but that sounds like a lot of a huge percentile higher so if you assume okay the doctors telling me two weeks maybe think about it.
00:50:14 – 00:55:17
Well how how are we going to handle it. If it’s a month and how are we gonna handle it of his six months. And then maybe it’s a little less dramatic on your time and then you just have to understand that they will likely be okay if you leave and have a nice dinner. Go to the movies nothing. We used to do what you would do at this point. Go to a park you know. Just go for a walk or just by yourself or take your take your golden retrievers got one. That’s literally under my feet. I’m trying not to kick him in the head. So is there one other chapter. We should discuss before we sign off here today. A lot of them sounded really good. We could probably be here all day. Yeah we of touched on roles. Yeah one so curveball. Let’s talk about reward. That sounds perfect. Because so often we focus on the strain and the stress of caregiving and the challenge of caregiving and the burden of caregiving. And i don’t think that we spend enough time talking about the rewards of caregiving and Jen i’m just. I’m just curious. You know if you if you think about your time as caregiver what what rewards have you found in your caregiving experience. How has caregiving enriched your your life. I learned a whole new career which thanks to twenty twenty. I seriously needed because i was a portrait photographer. And since the last recession that’s been very challenging industry to be in. And i i needed something different and i was in photography long enough that i could do it without thinking so when i started podcasting and talking to people i had to move out of my comfort zone especially after i tapped out on all the local people i could actually interact with in person back in those days so i have gained a lot of dynamic learning and i can tell that it’s been a benefit mentally fit. You know cognitively because that’s important to keep learning new things so there was that process if meant a lot of really fantastic people. So that’s kind of on the personal side but had somebody told me that there would actually be. You know moments of humor with my mom. I would have thought they were out of the and mind and there were. There was while the day that she told me her brothers were normal people. I had a really hard time. Not totally cracking up. Because you know of course family dynamics pop into your head and you know. I was kind of under the assumption. That only one of them was sort of normal. But you know it was all debatable. I had a moment where i could appreciate that. Even though what she said was really strange. And i had no idea where that was coming from or or why she was telling me her brothers were now normal. I guess they had not been normal. I know have no idea where any of that came. But i could enjoy that moment of humor because i was thinking about my family members. Her brothers in a way of well. You know what what is she thinking that makes them not normal trying to think of some other. You know just going to the park and sitting and watching the kids. It was relaxing. You know i knew. I was providing her with some stimulation. Something different you know some of the cognitive things that are important. That are really challenging. When somebody’s in memory care and also very difficult to maneuver because she walked so slowly there was days are days. I’m like. I’m pretty sure i could throw fire. Firemen carry this woman over my shoulder but boy with that not go over well. I’m sure she would not appreciate that. But you know there was days we’d just go to the park. And by the time i would get her seated on the bench and she she loved watching the kids and you could tell that it just brought her great joy and i just i could either deal with business on my phone which is getting pretty good at and considering i’m almost fifty four you know sometimes a little tiny not not like my big computer or i could just put my head back on the back of the bench and closed my eyes and feel the warm air on my face and listened to the kids playing and laughing and listening to the other parents interacting with their kids and it just it was.
00:55:17 – 01:00:01
It was kind of a peaceful. This that i don’t think i would have participated in had not been focused on providing her with joy. That is awesome so so just what you just. You just articulated janu. You talked about in terms of rewards from caregiving you talked about a sense of peacefulness. Talked about learning. You talked about enjoying and appreciating the present moment humor Opening your your path to a new career appreciating simple things Providing your care. Receiver your mother with the stimulation and the meeting her needs. That was something that was as rewarding for you to be able to meet her needs bringing joy and happiness to her life. And you know. That’s one of the i talk about some of these rewards of caregiving and invites the reader. The caregiver to really reflect on the positives that have come from caregiving because it teaches us so many profound lessons about life about being human about relationships about what we need really in the end of our lives. And you know. We’re all going to get there unless we’re just hit by a mack truck one day and overnight you know we’re we’re dead. We’re all going to experience. The effects of ageing frailty and potentially disability or chronic conditions and maybe even cognitive functioning problems. And so when you’re that close to someone at the end of their lives at the end of their life and you’re observing what they’re going through your learning about your future and The can do really profound is about humor that you just made me. Think of this. This thing that My my mother-in-law had cognitive challenges after her brain surgery for the rest of her life and one of those things was a phase. Which is where you you mentally know the word you’re trying to say but what comes out is the wrong word. It’s a different word Anyway at the time that she had her condition. Mcdonald’s had a new hamburger that was called the big and tasty. I don’t know if you remember that the big chair member seen ads for it. They had it for a while. And so we’re going through the drive through and we asked my mother in law. What do you what do you want. She’s like i want a big just laughed about that forever you know. It’s just like the biggest. Nastiest burger became the big nasty for the rest of its existence in our household. But we enjoyed that that laugh. That only came because of her cognitive challenges and she laughed with us now. She knew what she was trying to say. She just couldn’t say that’s crazy. It’s interesting when as you reiterated. What i said a lot of what. I’ve learned being a caregiver from four. My mom see if i can speak has really really helped with his challenging time of twenty twenty. I’m i’m not an introvert. But i’m not super extroverted so social and then when i’m done when i’ve had enough it’s time to just go home and do my own thing and that kind of includes family. It’s like do things with my husband or my daughter lived with us. You know. i didn’t have to do things with them but knowing they were in the house was fine but then when they would leave. I’d be like no. No white is very strange but being able to appreciate the simple things. ’cause that’s kind of all that’s left right now living in the moment because we can’t plan ahead which is really frustrating for me. All of these. I learned and i didn’t really realize that i learned a lot of those lessons carrying from my mom. So yeah so there. There’s a big. And i i really i really think that part of caregiving does not get enough attention agree. It is a a singular learning opportunity for us in prompts us and challenges us to grow and So that’s a great thing we also become more more. Empathic more understanding of others and more compassionate. I remember a conversation with my husband.
01:00:01 – 01:05:08
We were walking dogs. there’s a a regional trail not far from our house and i like variety. So we’re walking the dogs in the same direction of the same time of day blah blah blah blah boring and. I remember thinking man. I feel i came in jail and as soon as that thought crossed. My head has like People are in jail prison. They don’t get to walk the dogs along the trail and look at the trees and the sunlight and have nice fluffy golden retrievers. I love you so much and it actually made me think about you. Know criminal justice reform. Which i think this was prior to all of the Protests and things. That happened over the summer but i thought it was really interesting because it was like. Wow i mean all of a sudden opens your eyes to different. Yeah it was like wow. This is This is very weird. You know we’re the what’s were are having the phaser myself. I guess what i’m trying to save is not coming out. It was like a weird consequence of you know my life shrinking because of the pandemic and just basically living in fifteen five square miles fifteen square miles. The talent must be fifteen like five and three like most people now. I can’t do math. So now i’m walking. It’s like there aren’t a lot of options not a lot of variety to participate in. So i’ve just had to learn to enjoy what i have expand on what i can expand on and just hang in there. Hopefully the Turned corner and walter in a corner and and see the finish line of this pandemic real soon for real But you know just amazed me that i had that insight into how you know if i feel like this and i get to walk the dogs. What is like living in. Like a whatever those i don’t even know what a jail cell sizes it’s tiny you know. Maybe we should rethink that his cognitively. That can’t be good for somebody so it just it was like this. It was almost like getting punched in the side of the head with a realization that You know might wanna rethink some of this stuff because it’s it’s good cognitively for them. Which means you know. They’re real rehabilitation. Now there’s extra talented. It was a whole fascinating topic. We could go on. But i don’t want i don’t want this to be a three hour podcast because nobody would listen so you have one last bit of advice before we sign off. This has been really fantastic. And i really appreciate it. Thank you thank you. Jen i would encourage you know. I’d love it if if your audience read the book and told me what they think about it You know. I tried to make it. Try to write a book. That was very relatable for caregivers very concise. I did not want a long winded book. That you know where the person goes on and on and on So they’re they’re concise chapters but the chapters also have these questions for reflection that are designed to help the reader think deeply about their experience and identify ways that they can approach caregiving more proactively. And that will allow you to be a better caregiver. And you know. I’d be honored if your audience picked up a copy and i’d love to hear what they think about it. Definitely well the link for ordering the book will be in the show notes. So it’s easy to do. And i remember the the questions from our previous conversation and i really think that is a smart addition to the book and if we can spare some time to as you said think deeply about our experience and what we’ve gotten out of it that might really help turn a negative feeling into something at least neutral. Maybe not positive but it might help get you through another day or another week until we find the finish line which unfortunately when you’re a caregiver the finish line is not generally it’s not generally a happy ending but you will get through that to which you also talked about in the book. But that’s for another day. I hope you enjoyed that conversation enough to share with friends and family. And while you’re at it could you head over to apple podcasts. And leave a rating and possibly a review. Even if you’ve done this in the past this helps new caregivers finest podcast and we’re still growing so we really appreciate the assistance while you’re on the computer pop over to my website. It’s about as done as it will ever be. A believe will always be a work in progress. There are articles recipes all kinds of fantastic information. While you’re there make sure to sign up for the newsletter that way you’ll never miss anything interesting and with our busy lives.
01:05:08 – 01:05:16
I know that’s really easy to do. And as always. I’ll be in your ears again next tuesday.