A podcast that listens, hears, and offers wisdom & hope from caregivers who have lived the experience.

A Supportive Podcast for those Dealing with a loved one with Memory Loss

Cruising Through Caregiving

Cruising Through Caregiving

00:00:01 – 00:05:04

(Intro) 

Is it even possible to cruise through caregiving? While there will be challenges, there are ways to make the journey a little bit easier. Caregivers give up a lot however, it is entirely unnecessary to give up on relationships, jobs, and more because with a little effort there are ways to reduce your responsibilities and your stress. By developing certain habits and routines you’ll be able to learn how to cruise through caregiving like a champ. My guest comes from both sides of caregiving: personal and professional. Some of the ideas you’ll hear in this episode are how to think critically about choices, not emotionally, choosing care the right way, and more. There is not a one-size-fits-all solution for caregivers this episode reflects that which is why you won’t want to miss a minute. 

(Sponsor Plug)

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.

(Jennifer)

 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 took saved with Caregiver Chronicles. It starts from the very beginning with the diagnosis, but you will also get courses 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, conflict, home health, hospice, and planning for your loved ones transition. There are three options available: one lesson, which includes two private consultations. Eight lessons which include four private consultations and their weekly live group invite or all 16 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 the Fading Memories podcast. 

I could have called this the lost episode because after recording it it went into the published files instead of unpublished and that is why you’ll hear references to me dealing with my mom. It was recorded December 18th, 2019 a week later was Christmas and then mom fell and we moved and then covid-19 happened and Mom died.So I think I have a good excuse, this episode is completely worth waiting for, so enjoy! 

With me today is Jennifer Fitzpatrick. She is the author of Cruising Through Caregiving and offline I just explained to her why I could use a little cruising today. She is also a professor of gerontology at John Hopkins University. So, you know just a little little smarts behind this gal today. So thanks for joining me today Jennifer. 

(Jennifer F.)

Thanks Jennifer. It’s always nice to talk to another Jennifer. 

(Jennifer)

Makes it very easy to remember who I’m talking to. So, how did you decide to write the book,do you have personal experience with dealing with memory loss? She’s shaking her head yes. 

(Jennifer F.) 

So I have both personal and professional experience dealing with caregiving. So I’ve been working in healthcare Senior Living one way or another since I was sixteen and I’m forty-six now, so I worked in high school. I worked in a nursing home and I you know spent a lot of time around older adults that were sick a lot with cognitive impairment, but I’ve been a caregiver several times also. But what’s really inspired because I felt like so many times I was hearing the same story over and over and over again from family caregivers who were giving up everything for caregiving, you know their relationship with their spouse. But they’re not spending time with their grown kids or their grandkids or even maybe they still have little kids at home. They’re not spending time with them. They are missing out on their friendships. They might leave their jobs that they like and I wanted people to know that of course caregiving is never a vacation. But if you want to, if you could make a point to try you can  I say cruise a little bit more smoothly through the process and so every chapter is a different way to reduce your stress.

00:05:06 – 00:10:13

(Jennifer)

I probably should have read that before dealing with my mom yesterday. 

(Jennifer F.)

Well, it’s not too late. I’m going to send you one.

(Jennifer)

 Oh, I appreciate that. I am developing a library that somehow I will share with other caregivers. I haven’t figured out how to do that specifically just yet. But I have a lot of books that have been very helpful and you know, I’m not gonna hoard them, so I appreciate that. So who did –  you said you have done caregiving twice, who was that for? Parents?

(Jennifer F.)

 I’ve done short-term caregiving and long-term care giving. So my my grandma was short-term, she broke her shoulders when I was in my early twenties, both of her shoulders at the same time. 

(Jennifer)

That’s nasty.

(Jennifer F.)

 So my yeah, it was it was crazy and think about all the stuff you can’t do and you don’t have your arms, you don’t have your hands, you don’t have your shoulders and it was only for four weeks and I learned a lot. That was probably my first caregiving experience but my aunts and I week committed to her that we would do everything for her for the four week period. Because she didn’t want my grandfather helping her in the bathroom or anything like that. So my aunt’s took off work during the week and then I came up on weekends because I lived about two hours away, but it was such an incredible experience for me because my grandmother was cognitively intact. She’s one of my closest friends. I was happy to do it, but I was doing 48 hours where she could tell me what she needed but I was still completely exhausted at the end of the 48 hours and it gave me such insight. This happened, you know, my early twenties so it gave me so much insight into what people like you go through when you’re doing it with it for a decade and if the person has dementia and they can’t tell you what they need. She could say, I’m in the mood for a sandwich or I’m hot, turn on the fan. 

So that was one experience and then my grandmother-in-law, my grandfather, my dad with some mental health stuff, caregiving in that respect. So yeah, there’s been a lot of different kinds of caregiving. And I am really grateful that you know, I’ve had some professional experience because it also gives me a lot of empathy for people who’ve never worked in health care because if it’s hard for those of us who have experienced and we know about resources. It’s so hard for people who don’t know any of that. So that’s one of the reasons I wanted to write the book. 

(Jennifer)

Awesome. I can relate to the broken shoulders. In May of 2016 I flew off my bicycle and broke  my collarbone and the only bone I’ve ever broken. Thank goodness! Knock on wood.You know, thankfully it was summer. So I wore elastic waist exercise shorts that were a little big so it wasn’t super easy to get them up and but my husband did have to hold the hair dryer while I used the brush because I was not spending three months not being able to style my hair. Yeah, and I think it’s just recently he said I was drying my hair, you know normally again and he’s like I kind of miss that and I was like are you crazy. 

(Jennifer F.)

It was a bonding experience.

(Jennifer)

 I guess. I just thought it was like the only way I can leave the house looking at least halfway decent. I had to wear a strapless bra for months. And it was terrible so I can relate and I only have the one so I cannot remember, I remember the one time when the entire family just sort of a baby being I’m like, oh this make my own sandwich. So I’m trying to quit the mayonnaise on the bread and it’s sliding around the counter. I’m like help.

(Jennifer F.)

 Yeah, it was really eye-opening that experience and you know you experienced half of it. That was really tough for her. 

(Jennifer)

I can’t imagine both. How did she managed to break both shoulders. That sounds horrible.

(Jennifer F.)

She fell forward and she was at my cousin’s football game. He was in high school and she slipped on some mud and fell forward and you know the thing about it is that we had an ending in sight and that you can say, alright in four weeks. She’s going to be able to do this again for herself and she knew it. We knew it and so many caregiving experiences are not like that. There’s no ending insight before your jobs going to be done.

(Jennifer)

 Yeah. That’s that’s the one thing like, you know, when I’ve talked to people and I tell them, you know, we’ve been doing this for like probably around twenty years and regular listeners will know that I actually think that my mom started showing signs of memory issues when she was fifty two and half and I just recently turned fifty-three.

00:10:13 – 00:15:05

So she was the age I’m at now which was in the summer of 1995. Okay, this is the end of 2019 you guys do the math because I don’t want to do the math. Yeah, I mean it’s just you know, and like we were talking offline people say, oh, well, you know, you should be thankful that you still have your mom. I lost mine three years ago like yeah. I lost mine way back when I mean, I don’t remember not having issues related to her memory because we had a business together and everybody knows this –  people think I’m going to have Alzheimer’s cuz I tell the same story gonna have to think on a new one. She would take orders from clients with no instructions, due dates, no way for anybody else to complete it which, you know, occasionally, I’m sure we all do that, but it just got worse and worse. 

And then one day I found one of these orders and I said, you know, what are we supposed to be doing for Jenn Fitzpatrick here and she looked at it. She was I don’t know that so and so’s handwriting and I’m like, nope. That employees handwriting was loopy and moms was very angular. A person running past the two orders would not have mistaken them together. My handwriting and my mom’s. Yeah, I could see that mix up. Not her and the employee. So that was like that was not a fun morning because I basically you know, she said well, I don’t want to end up like my mother. My grandmother also had no memories the end of her life and then she stomped away from me and I’m like what am I supposed to do, kill you? Because I got pretty strong feelings as to where we’re going and that was in the early 2000s. So I’m serious, I’m ready for some cruises. So I know I’m going to ask a question. I don’t know if I’m throwing her under the bus with this question. I have a friend whose father has Lewy Body and he seems to be very adversely affected during the full moon. And I mean like literally just kind of goes off the deep and it just – she’s older and he’s ninety-three so I’m not sure how she is but she’s older than I am. It’s just exhausting and I think that’s fascinating but also super frustrating so I don’t know if you have advice for – I mean ideas of why that would happen or any advice?  

(Jennifer F.) 

 So I don’t have any evidence of this but my massage therapist tells me that I text her when there’s a full moon and I don’t realize it  like I’m having muscle aches more than usual.

(Jennifer) 

 Interesting. 

(Jennifer F.)

If people swear by that I don’t have any evidence to support it or back it up. But I think what is important is if she’s noticing a trend, whatever the trend is. You said full moon. It could be when it’s raining out. It could be when it’s the holiday season. It could be when little kids are around but she is noticing a trend and so I think what’s really important is for her to plan for those trends if there’s behaviors that she seeing associated. So whether or not you or I or anybody else believes in that full moon phenomena is actually not relevant she seeing it. So it might be if I talked to her I would probably ask her, what are you doing during that time to make the situation a little bit better? Are you bringing help in? Are you, what are you doing to try to ease those behavioral issues?

(Jennifer)

That’s good! And I’m going to suggest that to her. He does go to Senior Day program. I think it’s four days a week. Of course in November of this month or no, December – I’m already losing my mind. 

(Jennifer F.) 

No you aren’t, you’re just tired. You saw your mom yesterday and you’re tired. 

(Jennifer) 

Ohhhh four hours was too much. He couldn’t go to daycare, that’s what she calls it. I try not to call it that because- 

(Jennifer F.) 

 I wish they would come up with a new name. 

(Jennfier) 

Yeah, a lot of people will call it like club and other people have names for it, but he was congested and she was pretty sure that he had a cold and she didn’t want to take him to the senior program because she didn’t want to affect anybody else. Which you know blessings to her and you know in the full moon and it just affects his behavior and she can’t get rid of him a few hours a day.

00:15:05 – 00:20:01

She was just ehhh,  so I will suggest her  and I’ll ask her if since she knows this happens and it is every single month if she’s planning, you know, like think about it. Like what has he done in the past six months and see if there’s a way to adjust what they’re doing. So other than…

(Jennifer F.) 

 Whether it’s so and of course, it’s lovely and I applaud her for trying to keep him away from the other folks at the center. But because he was physically ill but I would say as much as possible don’t disrupt his routine if she can help it next month. And I would say if she’s noticing whatever again times a day, times a month ,where there’s more issues maybe look into bringing in a little bit more support, a little bit more help. And then also whether she brings more family help or friends or she hires help but then also what is she doing to reduce her stress after these difficult periods. Maybe she hire somebody or you know, he’s going for days a week. Maybe it’s time to up it to five. 

(Jennifer) 

Yeah. I’m not sure they’re open for five, but I will and I know she has people that helped at their house. And she had commented to another gal who’s in our support group whose husband also attends the same program. She says I don’t know how you do this because this girl is taking care of her husband full time. She’s actually had nothing but problems with caregivers. I guess he’s very tall and I guess I don’t know. I know she’s had a lot of issues with getting people that can actually help her with what he needs help with. So one friend was coming to the other like I don’t know how you do this and then I feel guilty because my mom is in memory residence. And so if I don’t want to deal with it, I guess I could just say I’m not dealing with it today. That is not how I it’s not how I roll but your taste.

(Jennifer F.) 

 I think what you’re talking about. It sounds like It sounds like it might be time for her to consider. what your mom has. What I would say to people is like on a regular basis you want to be assessing zero to 100. Where’s your stress level as a caregiver? So zero meaning you’re on some really great drugs or dead and then a hundred means you are about to collapse. Like you can’t take anymore stress. And if you’re repeatedly 70, 80, 90 what are you going to do in the next week or month to reduce it Incrementally? Just a little bit. What are you going to do to just reduce it a little bit and there’s all kinds of things that we can do, right, but If you’re repeatedly at this high levels of stress. I love adult day, listen, I do and I don’t love the name, but I don’t love adult daycare. But I love the concept. I actually have run an adult day. But I think that it is a great deal financially, you know, it’s a great deal. It’s one of the best bangs for your buck in the world of caregiving healthcare, but it’s a lot of work. You have to get the person up and ready and dressed and you brought up the great point, your friend was very mindful. He’s got a cold. He’s ill I don’t want to take him,I don’t want to infect others. That’s very lovely but then you know, he’s got to come home and and it’s I think it’s great for a lot of people for a long time. But there for many people especially with Lewy Body, it does come to a point where it’s time for the next level and that’s probably Senior Living. I’m really glad that you know, you’re twenty years in ,twenty-five years in whatever, I’m really glad that you took the plunge. I think a lot of families wait too long until their health is awful. Their mental health is not good. They’re mad at you know, spiritually they’re a mess. So I think it’s so-  a lot of times home is not the best place for your loved one who has dementia.

(Jennifer)

The reason we made that choice, my dad passed away just after my fiftieth birthday and I found out that he just assumed she’d come live with me. Which was really ludicrous because one, he never discussed it with me, so I’m still mad at him. You know almost three years later I still want – I can’t dig him up.

00:20:01 – 00:25:00

He was cremated but,  I say dig him up and beat him up. And two, he died March 2nd, 2017 my daughter moved out February 1st, 2017. So in his life span that he could remember cuz at the very end his memory was also the pits. I didn’t have a room, my husband are self-employed and it’s like, I’m sorry. I am fifty years old. I’m really feeling old now because  I’m fifty-three and finally got rid of the kid and I’m like my maternal grandmother lived to ninety one. So I am not – my mom was 75. So I’m like, I’m not waiting another fifteen or twenty years to have a life because  Lord knows what you know might be wrong with me when I’m in my seventies. No, thank you. And I also knew, again as I mentioned, I have one child because that’s all I could deal with. There’s no way I can deal with my mom. I knew at the end of one week of dealing with her because when my dad was in the hospital mom, and this is the worst thing possible for somebody with memory loss. But we had to bounce her, she’s at my sister’s house. She was at my house. She was at her home with her sister who was eight or eleven years younger. I always forget and so there was all this upheaval and confusion which you know was bad enough for those of us that don’t have cognitive issues, but for her, it was just dramatic but everything was a trial and the stress level from you know, my dad in the hospital and bouncing her around and you know, just getting her in the shower or you know, she’d opened the bedroom door and let the dog out in the middle of the night and dog would pee on the floor. I have three golden retrievers. I did not need a fourth dog peeing in the house and like well, I knew after a week one of us would be dead. 

So my sister and I had discussed some options. Our aunt, mom’s sister, had taken care of their mom until grandma died and I will never understand what in the hell happened with this family, but they let her take care of their mom living on Grandma’s Social Security. So when my grandmother died my aunt ended up destitute, so she’s on welfare. She’s on section 8 and it’s like are you kidding me people. Not cool. So my sister and I had thought perhaps it would be beneficial if my aunt moved into my parents house. She took care of Mom. We would not hire a caregiver for at least eight hours a day. Because you know she shouldn’t have to deal with that 24 hours a day again. And then I am a very planning person. I I like to know like path all laid out  which I’ve learned has never happened and I started thinking about it and I’m like, okay well, my mom is significantly older and her mind is not good. You know, I can’t imagine my aunt going first so if my mom dies and my aunt is still around and she’s living in my mom’s house. She has to you know, wait two or three years to get back on vouchered housing. So she’d be living at my parents house. There’s expenses there, you know, so I thought of like the absolute worst case scenarios, like what can be the worst possible things that happen and I was like, I don’t want to go through this. So I started looking at Assisted Living residences. There’s one literally a mile down the hill from my house. I wish it was better. That’d be really nice if Mom was that close, but she’s not. It’s also like right next door to a doctor which would be really great. Anyway, so I found the one that she’s at they said oh, yes, she could keep her dog. I was like money. Here’s a deposit. When can I move her? You know, I didn’t do all that vetting. I got very lucky. I went in with gut instinct and so far she’s been there almost three years. It’s been great. 

(Jennifer F.) 

Theres so much about what you just said. Sorry. There’s so much about what you just said though that is right on target, so much. You know for one, you know said this is not going to work for me and so many adult kids, especially daughters you don’t give it that critical thought. And what if this is another ten years, twenty years you didn’t ask. I really applaud you Jennifer because I can’t tell you how many people don’t do any of that critical thinking, they make the decision all based on emotion. And you did such a good job. The other part of what you said that I really just thought that was so smart is so often people choose Senior Living Community based on geography. Of course, we don’t want the person four hours away.

00:25:00 – 00:30:04

But yeah, it would be great if it was a mile away, but it’s not the right fit for whatever reason and you picked the one that was the right fit. It’s very tempting to try to make it work. It’s close. It’s next to the doctor. If it wasn’t the right place for her for a variety of reasons, you avoided a big mistake of having to move her again. So I really applaud everything you just said.

(Jennifer)

 Thank you. Like I said, I didn’t do a lot of the vetting and I didn’t look around that much. There are a couple other places.

(Jennifer F.)

 But that’s okay. That’s okay, you found what you were looking for.

(Jennifer)

I guess so, I mean so far there hasn’t been any issues. I mean, like I said, I think this was offline, you know, she’s really declined a lot in the last seven, eight months and the staff is still very surprised that she gets verbally aggressive with them when they have to insist on helping her with her shower or changing. It offends her and she gets angry, it’s so frustrating. So when I went to pick her up yesterday, she was sitting in the dining room and she seemed happy and she was thrilled to see me. I’m her best friend and she knows we’re going to go out. So seeing me as always a positive which is great because it doesn’t last forever, the caregiver who has the unfortunate job of showering my mom obviously had taken care of that process yesterday morning because my mom was not happy with that gal. And she’s telling me oh mom needs this, mom needs that, can you can you bring these things back when you bring mom back and I said, oh sure we’re chatting and my mom goes, we don’t have to listen to her, anything she says. And she stops off and I’m like, oh apparently she’s angry with you today and she’s like, yeah, she called me a b i t c h and I’m like I am so sorry. And they’re like she was so sweet, so easy to deal with and I’m like you didn’t grow up with her like she was pretty easy to deal with as long as you did things her way. You ticked my mom off man you were you were looking for that line. And where is that line I crossed I got to get back over it. You know, I mean she wasn’t, you know abusive or anything as a parent. 

(Jennifer F.) 

She wasn’t easy all the time. And most parents are not. 

(Jennifer)

No and I’m surprised it’s been like 8 months and they’re still shocked that she you know swears at them or fights with them. Like maybe I should have warned you people that would happen but I guess I wasn’t, you know not having dealt with my grandmother in that capacity I wasn’t aware of what may or may not happen with my mom. That’s the really hard thing is it’s like literally I went to visit her, you know, my typical Monday. I had run into a husband and wife at the gas station and then like, oh, we’ve just come from visiting her mom. We are busy with your mom blah blah blah blah big conversation at the gas station. And so I knew that she’d already had a quite active late morning or early afternoon, so I get there and she’s just loopy and tired and grumpy and I’m like, okay we’re going to do this one little errand and then we’re just going to keep it short today. Because she just is out of it and it’s just it’s not going to get better from here. The next day the staff called and said mom is still out of it. She’s very dizzy and I’m like, she’s got a UTI. I have done enough research, this overnight change in behavior gotta be that it was. And it wasn’t. She just went whoop and declined like all at once. Big decline and there are days I think okay, we kind of stabilized at this new age level but there are days. I’m not so sure that we stabilized. It’s I don’t like what I said, she was very grumpy with the caregiver yesterday. So that didn’t help and then we went to the Rotary meeting to listen to the high school kids singing the Christmas carols and it gets very loud. There’s almost a hundred of us.

(Jennifer F.)

 Yeah, you were saying.

(Jennifer)

 Yeah, there’s a lot of us and this is the first time I’ve heard a commotion about the noise level in a long time, which is something she used to do. I mean we had to stop going out for dinner for people’s birthdays because I don’t know they don’t make restaurants that are relatively quiet that don’t cost three arms and a leg. And she would just literally complain about the volume like every five minutes. Oh my God. It’s so loud in here. Oh my God. It’s so loud. And like after a while you feel like okay, can we please leave becasue I can’t take it. 

(Jennifer F.)

You’re smart because you know in Cruising Through Caregiving I constantly talk about course correcting if it’s not working.

00:30:05 – 00:35:14

Stop it and pivot. Stop going out to dinner and you’re so smart Jennifer because there are people that will be like my mom loves to go out to eat. We’re not stopping and it’s amazing because maybe she did but now she’s different and she doesn’t like the noise and the only thing that I would say is check out dementia-friendly America because they have a listing of restaurants that are dementia-friendly. So I don’t know, it might not work for your mom. I know for some people it’s just it’s like they get a certification that they’ve had the training and I’m not saying it’s going to be perfect but it might be an option but maybe you just keep doing what you’re doing and you find other activities.

(Jennifer)

 That’s been my biggest challenge. Yesterday, I took her and  picked her up. She asked if what she was wearing was okay, and it was very – I’m in Northern California again so whe I say cold and foggy bear with me because…

(Jennifer F.)

Oh, was it sixty? 

(Jennifer)

 Well, I think it was like mid-fifties, upper fifties. 

(Jennifer F.)

But it did get thirty here. 

(Jennifer)

Oh, yeah. No thanks. Not my idea of livable anyway, so I took her –  she wanted to know what she was wearing was fine. And I said, well it’s kind of cold out, you know, maybe you want to put on this  sweater and I found a sweater that was thicker and it was a little more festive. So that worked out really well and I didn’t have to argue with her. I wasn’t going to argue with her about changing her clothes, whatever she was wearing was how we were going to go. So after the meeting we went downtown to look at all the decorated Christmas trees and her biggest issue and we did Jennifer and I did talk about this offline a little bit is her visual processing is so bad that any change visually in the walkways throws her off. I mean she pretty much bends over and  watches her feet because she’s afraid of falling. Now a past guest suggested that I have her  looked at for cataracts and I’m going to talk to her neurologist about somebody to do that. I hesitate on if she does have cataracts do I do the surgery to improve?

(Jennifer F.)

 It’s such a hard decision!

(Jennifer)

 Yeah, because it’s like that we’re looking at Christmas trees and they’re all they were all like six feet tall, but some of them had you know head sized ornaments ad  big bows. I mean just like very large decorations and that’s making it sound like –  they’re beautiful and one of them had hummingbird feeders and hummingbird decorations. They were super cute and they weren’t little and I’m like, oh look at this, this is so sweet with hummingbirds on she’s just like looking around so I actually took it off the tree. Like see and  I don’t think she could see it, now is it because her brain is not processing the information that’s going in that she does not really see. So I’m hoping I get an answer to that in the near future and then I can figure out what to do. If I do get an answer that she has cataracts because walking places even though she was physically capable of walking like a normal person and I know somebody might find that term offensive she doesn’t it’s frustrating. Because she will stop at a  curb and there’s a lot of thinking on how to step up a curb. 

(Jenifer F.)

Oh, yeah!

(Jennifer)

Which is normal. She’s been working on it. She absolutely does not want help so she does not want to hold my hand. She doesn’t want to take my elbow and over the summer you know, she basically we’ll lean on hot cars to step down one curb into the parking lots which you know, hello hot stop that. Also, you know, I’m not worried about her damaging somebody’s car but I think you know after a while people are like what’s with this old lady like grouching the car and I don’t want her to get burned so I’ve learned if I hold my hand up like this and say would you use my hand for balance? She will do it reluctantly. So we’re getting there, hoping to work on that some more that way she’s not- she will literally stop at a curb and like I gotta grab her because she overreacts so badly and she’s going to fling herself on the ground. 

(Jennifer F.) 

Well, you know being concerned about her safety is important but as far as somebody else, have you utilize the cards from the Alzheimer’s Association?

(Jennifer)

 Yeah.

(Jennifer F.)

 You do have them? 

(Jennifer) 

I do and I’m actually going to make some new ones for me and I think I’m going to share with our support group because every body this past month was like, oh we need more of those cards and I think the facilitator gave them all out.

00:35:14 – 00:40:10

You know, but occasionally when you’re in a parking lot and she’s literally you know, on someone’s car  I can understand how somebody would be like, what the heck what’s with these two ladies over here? Like I said, I’m not worried in the slightest about her damaging some of these car. I’m worried about her getting burned or it being hot and then her over reacting to that and oh Lord I don’t know. It’s just so much fun. So what other advice do you have for people like me and all the listeners on how to- what I find is people like I’m in this situation. So today is September. I guess that I’m tired, December 17th 2019. This will come out after the holidays. And I am dealing with the guilty feelings of if I don’t spend Christmas Eve with my mother that makes me this horrible person. But if I spend Christmas Eve with my mother, I will not have a good time and at some point I’m trying to figure out you know, she has no clue what day it is. So  there’s an event at the community she lives in.

(Jennifer F.)

 Yeah. No you are asking a good question. It’s a really really good question. So I would say you gotta have a balance. I would really look at first of all, if you’re thinking of bringing your mom with you to an event you said it’s going to be, as you’ve already discovered, trial and error. She’s not good at restaurants anymore. And for the holidays like what you went and got go listen to the music and look at the decorations. She didn’t seem like it was the best fit. You might want to look at like what are you thinking of bringing her to, so I think as long as you’re celebrating with her in some way I think you’re all set. So let’s say maybe you and your husband and your daughter maybe you’re going to go have lunch one day and I don’t know how or where your mom is of the actual day of the week. It’s definitely Christmas Eve. It’s Hanukkah. It’s New Year’s Day.

 But if she’s not you can play around with that and go celebrate. Hey, we’re celebrating Christmas today. We’re celebrating Hanukkah today. We’re celebrating it’s New Year’s pick the day that you want to do it and make that celebration, give her her presents and I think for a lot of people with dementia, not taking them out of their routine can sometimes be the best thing for them or if they’re like you said if they’re having a nice big event at the community where she resides and she enjoys that maybe you go to that. But I think that family caregivers are just so wrapped up in what they should do at the holidays, what we have to do, what she will be mad at me if we don’t do this. Gosh, my dad would be so hurt if he knew that I didn’t take Mom here, you got along that go. And so what’s she going to actually enjoy? And then we deserve to have a good holiday too, you and your husband and your daughter and whoever the extended family is, you know, if you bring her to a family function where there’s a lot of lights, and toys and small children and music, you know, it might be a miserable mess.And I think when families do that to themselves and they a lot of them they know they know. They know ahead of time but they do it anyway, so I would say that what you want to really think about is what is something you can do to celebrate with her. That’s gonna make everybody feel good. And then also you and your family deserve a happy holiday also, so you gotta you gotta really let yourself off the hook. In fact, one of the chapters in Cruising Through Caregiving is called let yourself off the hook. 

(Jennifer)

That sounds like a definitely a good one for people to listen to – to read and pay attention to because it is really hard. I mean, I know she has no clue what day of the week it is, what day it is, time, season, year, none of that. I could skip Christmas and you know only the people around her like the caregivers or other family members and I go on my own. My sister goes on a different day.

00:40:11 – 00:45:04

They’re the only people that would know but I still feel like I feel guilty because I would like for her to enjoy the holidays, but I also know she probably won’t and I would like to enjoy the holidays which means I probably should just leave her where she’s at. So I think this year I’m going to go either on the 22nd to the party that they’re having in her residence or on Monday the 23rd when I normally go and we’ll figure out something although my husband after yesterday is like Mom has had enough holiday. Which she might have.

(Jennifer F.)

 Well and that’s something to think about to Jennifer because I think if you feel okay with what – you’re going to go on the 22nd. There’s going to be a party. There’s going to be- it’s enough. It’s enough, you know, think about everybody that’s a family caregiver. Anybody that’s listening to this program. You’re doing probably way more than most people out there because the truth is there are you know, this you go see your mom. There are people that have no visitors, maybe once a year. You’re going on a consistent basis, that you’re actually thinking about what would she enjoy and what would she not enjoy? It sounds like that’s the right plan. Go to her celebration, especially, you know, I think a lot of family is oh my gosh. She’s going to be sitting there on the 24th. And oh we used to go to midnight mass and she’s going to be wondering why. If she’s not in that headspace anymore, it’s about you and we have to let that go. 

(Jennifer)

I think that’s excellent advice. So that’s probably a good place to stop because I think you have to go,right? And if you have any last tidbit that you can offer that would be great. But other than that, I really think everybody should definitely check out Cruising Through Caregiving becasue those of us doing it know it is no cruise. It is no picnic and Jennifer obviously has experience and advice that we should all take to heart. Especially me. 

(Jennifer)

So, you can get a free chapter at cruisingthroughcaregiving.com and also  I don’t know if you’re aware of hilarity for charity? 

(Jennifer)

Yes. 

(Jennifer F.) 

So I,  along with a company called Oasis Senior Advisors, they sponsored it. Hilarity for charity and I as well as Oasis we did fifteen weeks of a virtual book club for dementia caregivers over the summer.And all of the videos from that can be found at cruisingthroughcaregiving.com. We had guests from the Alzheimer’s Association from AARP  from Argentum from National Hospice and Palliative Care Organization among others. And so every week for fifteen weeks and it’s all free. It’s on YouTube, it’s on my website and hilarity for charity’s website you can look at the week on work and caregiving, the week on choosing a community and caregiving, the week  although they you keep so many great tips today, honestly. I mean, that’s I mean you really get it and then the other part of it is I mean, there’s just a chapter on the late stages. Like when the person’s body is starting to shut down because they do pass away. So the only last thought I’m going to leave you with is you deserve to have a happy holiday. You deserve to have a less stressful twenty-twenty. We’re entering a new decade. And if you’re listening to this program you deserve, wherever your stress level is today zero to 100 days. You can reduce it. But you have to want to reduce it. You have to make that one of your decisions for the new year, so think about what are some of the small things that you can do in the next month, in the next three months, first quarter of the year, to reduce the stress of being a caregiver.

(Jennifer)

 That is excellent. Think about what you can do and make a plan. And hopefully your plans work out better than I’ve learned to make a plan. It’s a great way for you to find a different path.

(Jennifer F.) 

 Make a plan, but then you know, maybe it works the whole way that you want it to and then maybe it’s you know, it’s –  I think some plan is better than no plan and when I say that I mean what if you’re going to research Adult Day, research home care agencies, visit two assisted livings for when you need it. Do something that gives you peace of mind that when alright when  my loved one gets to this point.

00:45:04 – 00:46:52

I have some tricks up my sleeve. I have some options, but I think a lot of people say, oh my gosh all of a sudden there’s this big event crisis and I don’t know what to do anymore. And so I don’t mean that you have to go on a three-week vacation. I’m not saying that but what small things can you do to put your mind at ease  this new year? 

(Jennifer)

That sounds awesome. Well, I appreciate you coming on with me today and I will have all the links to your youtube and website and all that good stuff in the show notes. So people can click through and check out those videos in addition to you know, I have episodes on choosing in-home care and choosing a residence, you know, a care residence.  All that good stuff. So you can get multiple ideas and opinions that will help you guide your planning into the future. So thank you very much. 

(Jennifer F.) 

Thank you Jennifer. Thank you so much.

(Jennifer) 

 You’re welcome. 

(Outro) 

I told you that was worth the wait,  plus two Jennifers for the price of one. What more could you want? If you enjoyed this episode, please share it with friends and family. That way we can strengthen our caregiving teams all across the country and the world. If you haven’t lately pop off over to Apple podcasts and leave us a review. That’s how new people find us, and there’s going to be a lot more caregivers in the future so let’s make it easy for them to find me, check out the website and sign up for the newsletter. Lots of great stuff going on over there. Follow me on social media, you know the routine.

 I appreciate you listening and as always I will be in your ears again next Tuesday.