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

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

Navigating The Maze of Providing Care

Navigating The Maze of Providing Care

00:00:00 – 00:05:09

(Intro)

Expect the unexpected in every situation, from being shortsighted due to a diagnosis, to falling into the cracks between medical specialties. Just when you think you know what is going on, know that sometimes you can’t guess what will happen. You can spend hours and days trying to imagine every possibility and when you least expect it something you never could have imagined will happen and with the unexpected outcome comes the roller coaster ride. Once the decision has been made to manage care it is important to develop a care philosophy goal and strategy for reaching the goal with the patient. This will allow everyone involved with the care to have a clear understanding of the patient’s wishes and a plan to deliver them. Those are the wise words from my guest as we discuss navigating the maze of providing care. 

(Sponsor Plug)

This episode is brought to you by family history film; visit myfamilyhistoryfilm.com to find out how they can preserve your family memories in a fascinating documentary film. 

(Jennifer)

Welcome to fading memories, a supportive podcast for those caring for a loved one with memory loss. With me today is Trish Loud, she is an author of three books. One is Most Meaningful Life,  it’s about her and her dad who she cared for, Peaceful Endings and the one we’re gonna discuss today is Through the Rabbit Hole navigating the maze of digital- dignified caregiving. Apparently, I have digital on my brain.Thanks for joining me Trish! 

(Trish)

 Thank you. 

(Jennifer)

We’re gonna talk about navigating the maze of dignified care. 

(Trish)

Well -which is a little bit- it’s what caregivers have been doing, you know. My books are very much bullet-point books, I’m like you, when I was caregiving I didn’t have time to read all the books that were there. So books are pretty much bullet points, you know it’ll take a topic like medical facilities and it’ll explain who all the players are, you know. I don’t know if you’ve ever been in a teaching hospital, but the entourage walks in. And it’s like who are you? What is your specialty? This specialty doesn’t know this specialty, but they have fellows and they have residents and Oh, by the way, all those players change on July seventh every year. Note to self don’t have surgery if you can avoid it right prior to the seventh in a teaching hospital because then all of your care team changes. But anyway I think it’s a little bit different than the question of what you do during a pandemic. You know what is that called? Down the hall or whatever. 

(Jennifer)

Batten down the hatches. 

(Trish)

 Thank you, there we go. In a pandemic you stay home, you keep it as small and as simple as you can. Surely if you have to go to the hospital, but that’s not the time to be researching senior residences. So back to the books, sorry I am a little scattered here.

(Jennifer)

 It’s OK. 

(Trish) 

It’s all bullet points so you can go in and get one topic in three or four pages and find out the basis of what you need. Find the ten questions you need to walk into a senior facility or senior residents,  I’m sorry, and ask as a starting point. I’m a ballpoint kinda girl, you can tell by the way I talk. It’s just boom boom boom boom.

(Jennifer)

Well, the ten questions to ask when you move your loved one into the senior residents because I found out right before my dad died he insisted that mom would come to live with me. And I had just turned fifty and my daughter had just moved out. I’m like excuse me but I have worked my butt off since I was sixteen and a half. I am not giving up the next twenty years of my life. Now, if I had known it was going to be three. Maybe I might of … eh no. It wouldn’t have worked, she got very combative at the end. That’s how she ended up falling and breaking her leg. But I didn’t ask a lot of questions. 

They did a very good sales job but the place was convenient for me, wasn’t as convenient for my sister, but she lives out in the fricking boonies. And they said she could keep her dog and it was like here’s money. Where do you want me to sign? And I mean I think I went in on gut instinct and as I said earlier, they were fantastic. They put up with the dog for eighteen months until they renovated and she was getting quite nutsy because she did not have structure. And my sister and I had been kinda debating, the dog was grossly overweight. She’s almost double what she should’ve weighed. And we lost the battle of the MED techs feeding her because the dog was smart enough to know that if she got locked in the room during meals, she wasn’t going to get fed from the residents. 

00:05:09 – 00:10:04

So we lost that one which was really super annoying to lose that battle to what should have been a sixteen-pound poodle. Yes, she weighed twenty-eight when we moved her out so she was beefy. But you know so they didn’t even ask me to rehome her, my sister and I were like do we do it? Mom doesn’t seem invested in the dog but sometimes she does, it was just one of those. You never know, it’s never a good time to decide right so that the executive directors were like you know we’re renovating. And I’m like uh yeah. The scaffolding, the paint, the trucks, and the dumpsters where my parking used to be, yeah I got that. Well, you know about the dog. Well, you see you know we’re going to be putting in new carpet. He beat around the bush so hard it was hysterical. Like, say you would like us to rehome. Well I don’t really want to ask that and I’m like I know but that’s what you want, right. And that’s how he was when ten of us ended up in the memory care the day mom died when they wanted zero. So he never said, Oh my God, you people are gotta get out of here. He was really kind so I don’t know what angel was sitting on my shoulder that said, this place will be good. It’ll be fine but I seriously, I didn’t vet, I didn’t yelp, I didn’t anything. You’re having ten questions would have been very useful. 

(Trish)

 Your story is such a great example of what caregivers do, they look at the whole situation and say it’s not gonna work for them to move here probably. You have to look at so many decisions to decide whether someone can stay in their home; eighty percent of the people in the country want to live their lives out of their homes. Twenty percent don’t, part of that is they didn’t plan and part of it is that it isn’t realistic with considering your life, your family’s life, your sister’s life, the finances, the logistics, all of those things. And there is no one right answer but there things to consider and then you also adapted. You figured it out. She went there with a dog and then it wasn’t realistic and there is concrete – This is why I think even in regard to your question today, there are not one size all concrete answers. There are considerations and questions to ask and your gut told you and I am pretty sure, actually, I am positive had there been problems there you would have known it and you would have addressed the problem. Even if that meant you moved her. So yeah, are yelp reviews helpful? Sometimes. Are personal referrals helpful? A lot of the time. The one quirky little thing I recommend to people that they always look at me like what? I always say, eat a meal there. Because the biggest complaint that I’ve heard from people living in senior communities is they don’t like the food. 

(Jennifer)

No, they had great food where she was at. 

(Trish) 

 And food is increasingly important as people get older, it’s one of the things they can still taste and enjoy and it brings them comfort and it brings memories. So ask to eat dinner there or lunch. You know I saw it as crazy and unimportant, but it becomes important when they become dissatisfied there. It’s crazy but it’s true.

(Jennnifer) 

I don’t think it’s that crazy. I don’t think I had a meal with mom before we moved her in, I’m pretty sure I didn’t because I knew the situation that my sister and I had quasi decided on wasn’t. It’s one of those things where it’s like my sister and I do not see the world at all in the same lens. Don’t see it ever the same way and we had come to pretty much as agreement, we needed to loop in a couple of other people and have more conversation but we were on the same page, which is a freaking miracle, and then you know my brain that never seems to shut up. Was one day I was like okay, well this scenario that we’re discussing. Okay. The absolute worst-case nuclear option is if the worst stuff happens then what?

 And then  I kind of role played it in my head and I said, nope, not going to work. So I jumped off the page that my sister and I had managed to get on. Now thankfully, the person we were gonna loop in was not interested in what we were discussing. So that made it a little bit easier but I had already gone to the community and checked it out and my sister went in with different emotions which didn’t surprise me. And what I did like there is,I don’t remember the first time I had a meal with her there but I did,  they had a huge like a Thanksgiving buffet which was hysterical because her friend ate three desserts and she’d be like Oh I 

00:10:04 – 00:15:12

don’t think I’ve had dessert so she’d have a third one. It was like, how do you stay skinny when you’ve had three desserts? I just look at them and I’ve gained weight. 

(Trish) 

I told you food gets more important when you get older.

(Jennifer)

 Oh well, okay. Something to look forward to then.

(Trish) 

 And it’s not the most important thing obviously. But you know I think what’s really important even – I always say you have to make the best decision you can with the information you have, on any day you can also change that decision. It’s not optimal sometimes but the real important thing is like you. To continue to go there at different times unannounced to you know just show up and see what’s going on. You know that’s where you find out what’s happening. 

(Jennifer)

 It was always funny when I would show up early, it’d be like oh you’re early today. Oh, yea  we don’t have rotary today. So I ended up like two hours,  two and a half hours earlier or I would do some errands after rotary and I would end up an hour later and they’d be like, oh we were wondering if you were coming today. So they knew when to expect me and always threw them off when I didn’t show up at basically two o’clock on Monday. 

(Trish) 

 The element of surprise is your friend. 

(Jennifer)

 And then you know it was more like they never seemed like you know we’d polished up and you didn’t show up for two and a half hours. Or oh no you’re here two hours early quick sweep the bad stuff under the rug. It was always just because it was so consistent that when it wasn’t it was kind of dramatic,  it was very obvious when the schedule changed so.

(Trish) 

But there’s something nice about them knowing your schedule as well. But with the surprise changes because then you know if they’re expecting you that maybe there’s something that they wanna tell you then or you know there’s a good side to that as well. 

(Jennifer)

That is true. They always, I always tried to get there because I think they switched staff at two-thirty so I tried to make sure not to get there at two-thirty. Either show up at two or at three but not at three-thirty. But I tried to get there before shift change because the galette was responsible for mom showers and dressing, and she was always on that was telling me what my mom needed. If she didn’t see me before she left then I’d get a call the next day and I’m like I was just there you guys could have told me she needed toothpaste yesterday. No,  now it’s pain in the butt. Yesterday would have been easy, now it’s a pain in the butt. So you know that they do try to make sure to talk to you about stuff like that but she was – it was funny because when you know mom broke her leg and she was bed-bound because you couldn’t put weight on it. You know I’m thinking about the big picture, the care, the medical, the healing, Blah Blah Blah. And this gal who did a wonderful job taking care of mom. She’s like your Mom needs more nightgowns. What does she call those? Uh, housecoats, which made me laugh ’cause that’s not a term we use but that’s okay. 

(Trish) 

 That’s a throwback. 

(Jennifer)

She couldn’t have been as old as me. She was probably in her forties so it’s like you know it was like okay, housecoat. My mom didn’t even refer to them like that. So and it didn’t occur to me that mom would need you to know something she could just pull over her head and she said oh well, you know get her some dresses too for down the road and when I was shopping, that was the most surreal experience. This right before the shutdown and I go into JC Penney’s and the place is deserted and it took me like three times as long because the gal in the intimates department I think she was born for wine and she was older than my mom.And she’s like I have never seen this store this dead and I’m like, I know this is really weird. And that was Saturday and Monday was when the lockdown happened. So it was just it was crazy and I had debated I’m like I’m mentally stressed. I don’t really know,  I bought three nightgowns and some slippers and a jacket, you know a  bed jacket and I’m like i can’t contemplate dresses right now. My mom wasn’t a dress person and I’m glad I didn’t bother because they would never have gotten used I mean somebody would’ve gotten nice donated brand new dresses but you know. She was always the one who was like your momma needs this, your momma needs that. Oh okay, yes, ma’am. I’ll go get those. 

(Trish) 

That’s very sweet. 

(Jennifer)

Yea she was wonderful and I’m gonna go back. I went about a year ago maybe, a little more than a year ago with my youngest golden and took him to visit with the ladies. And oh my goodness he had a great time, the women loved it. So I’m gonna bring him back because there are some caregivers I didn’t get to see that day. You know and so that’s the other thing is it’s like, oh I just realized that there are about half a dozen people that are now also out of my life because mom’s gone, it’s like this is 

00:15:12 – 00:20:00

crazy. You know these things you don’t expect have to navigate. 

(Trish) 

And honestly the caregivers in the residences this is on steroids for them in a whole different way. I mean they lose people and you can’t even clean the room out. I mean they don’t get to see you and yeah, it’s just…

(Jennifer) 

 I mean they were supposed to have an event at the community in March. And I don’t know why they had such a hard time pulling it together because I kept saying, can you give me a date? I was supposed to go to Denver the eighteenth through the twenty-first, I don’t wanna buy a plane ticket for you people tell me oh yeah we’re gonna have our thing on the twentieth or the nineteenth. Because that’ll just make me crazy, please don’t make me crazy there’s already enough crazy going on. And obviously they never got it scheduled. They were scheduled for April but that didn’t happen for obvious reasons. So I will go back. I do want to still be part of the community. I feel like now I am a caregiver to caregivers so I’ve been promoted. I still have to go and clean out her stuff or at least boxed up so it can be donated. But it must be weird because they took apart her bed and stored it, and then the hospice people came in with the hospital and all their stuff to the hospital, the hospice equipment is gone. It must be really weird because it’s like some of her stuff is there, some of it’s not it’s just. I just walked by the closed door, which probably still has the wreath on it, the spring wreath. It’s just yeah like you said, it’s all on steroids and I think when they called me and said Mom’s not doing well, one of the comments that gal made was you know we miss you guys too. It’s like hello we get to come to work and look at our co-workers and basically all your crazy parents. So it’s definitely hard.  

(Trish) 

I’m using you as the example. There again is  something that’s really really I think important. If you’re gonna put somebody you love into a senior residence where they are receiving care I mean the being a senior resident where it is independent living but even there it’s important. I think it’s really important to get to know the people that you are trusting with their care. Know their names, say their names;  there’s nothing more valuable to a human being when their name. So you get to know them and they get to know you and I honestly think that makes a difference. 

(Jennifer)

The one thing I always tried and I think it’s because I witnessed the opposite behavior was I always thought that they were part of mom’s team. It was you know the people we were paying and as everybody knows those places are not cheap. And my sister and I and our husbands and the grandchildren and – my mom has three siblings. One of them’s three hours away. And so the younger of the two brothers brought her sister who they’re basically numbers three and four. My mom was the oldest. Number two lives three hours away. So number three and four would come over, it was about a forty or so minute drive you know on a good day, he would bring the sister over. So that was the team and my goal was not to make things worse, not to demand that they do something, not you know Hey, can you? Oh, you guys are servants, can I have one too? I mean I would ask politely or I’d go over there and ask and it’s like they’re not here to take care of me no matter how much money we’re paying them. They’re not here to take care of me and I always tried to find like a win-win or find the solution to the problem. You know taking the whole team into account because like the executive director, I don’t think that guy could get paid enough money because you know the residents complain, the families complain. I’m sure the staff complained. You know I mean right now, it must be just a complete nightmare.

(Trish) 

 And you know we’re asking people in senior residents to do a job. A level of a job any way that we are saying, we can’t do for a variety of reasons, and that’s okay to do that to say that. But I think it’s really important to you know if there are problems address but address them in a win-win way. But also just to really be grateful for what they’re doing and let them know that that we know from the kind of caregiving we’ve done it’s a hard job. One of the hardest jobs and so you know we might think, Oh you’re paying all this money and this is their job and they have to do it. That is true. But there’s an end to it and I am grateful for that.

00:20:02 – 00:25:02

And I really do. That if you are respectful, you know their names, you thank them for when they’ve done a great job. You bring attention to something exceptional or extra they’ve done to their boss. There’s no doubt that your loved one gets maybe some more attention.

(Jennifer)

They were always telling me, oh mom was so easy and now she is not easy I’m like you know she wasn’t easy when we were teenagers right this is not necessarily abnormal for her personality it’s just personality on steroids. 

(Trish) 

Well, I think personality I think when memory loss it amplifies. For a lot of reasons. 

(Jennifer) 

Mom drew blood on some of these caregivers. So when I’m allowed to go back in I’m trying to figure out what to do because you’re not supposed to tip them. I gotta remember this, you’re allowed to put money in a communal tip at the holidays, which is a long way off from right now I think. I will do that then too. So but I wanna make sure that the ones that were really hands-on at the end I want to do something for them but I don’t know how to do it yet. So that’s in the back of my brain.

(Trish)

You know my parents didn’t live in a senior residence but they were in medical facilities and when they were there any of the time we figured out what was appropriate to the group. We got to know the nurses and the CNA’s and all of that. You know sometimes, we brought them food and cards that we signed and wrote things in. I think there was some sort of communal, I  think we gave them money, but it had to be split into the group or something. Or the group could choose to do something I would think that if you hand them a personal card and ask them not to open it till they’re home. I mean I’m not suggesting we violate the rules, but you know. 

(Jennifer)

I thought about buying scrubs. There’s a company online that I guess they’re supposed to be really soft and excellent and I’d have to look up the name again. But they also when you buy a set of scrubs from this company, they also donate it to medical professionals that have a need.  So that’s a serious win-win.And scrubs arent really cheap so, you’ll have to look that up. Yeah, if I remember the name I’ll email it to you. 

(Trish)

Well, I’m trying to figure out something to do with our local hospital that has a Covid ward. Just to kind of perk them up a little bit. 

(Jennifer)

Supposedly these are really soft and for lack of a better term modern. I’m tryna  remember the commercial in the back of my head, but it’s like fit is better, the pockets are better. It’s just, they’ve updated them. So they’re better from what you know of course with what the commercial says. 

(Trish) 

 Yeah, well, if you think of it, let me know. 

(Jennifer) 

I’ll try to remember to google it. So is there any navigating the maze of dignified care for people that are at home? We kind of touched on it a lot with the how to  deal with all the insanity of our life right now. 

(Trish) 

Well yeah I mean I it’s just so very different right now and I think the best thing. Yeah I actually gonna look at some notes because I  wrote down a couple of things that I thought might- Again, if I was still with my dad I think it’s more important now than ever to stick with what works, successful routines. Amplify what works what has worked in the past. I mentioned  a little bit to avoid really really trying to be conscious of use of language. Avoid words that can cause anxiety because even if it didn’t cause anxiety before, they’re much more susceptible to the emotional charge of how you might word something. It takes an extra second to turn that switch on and say wait, how do I want to phrase this so it helps them continue to feel safe? Adapt to minimize social isolation. We’ve Kinda hit that on  the topic of senior residences, they’re using zoom. The same thing applies inside your home, their cutoff – maybe you’re the only caregiver. They’re cut off from anybody else on the outside; again zoom, facetime,  Skype, you can depending on where someone is in their process if they can still watch movies, you can use Netflix to do a movie party. Where everybody watches it at the same time,  there are unbelievable amounts  and  I’m not promoting myself. But if you to Trishlab.com/resources , there’s a section at the top. I’ve started putting links to things that are free that you can stream. So operas, ballets, you can take virtual museum tours, you take virtual field trips. Andrew Lloyd Webber is allowing you to stream his musicals. So bringing that into your home is even though the streaming is still.

00:25:03 – 00:30:03

Some of it’s not live. But it’s because it was live performances it’s more tangible, if  that makes sense. So fight the social isolation you know adapt there. I know we don’t have time I get it, but we’re not leaving the house as much as we used to, self-care. If, you can do fifteen minutes sitting in a room by yourself with a cup of tea. It’s invaluable, I mean it’s always important but much more so now and the other thing is I have found with my dad with Alzheimer’s. My mantra was you are loved and you are safe. Repeat that mantra you are loved and you are safe. But as a caregiver especially now you need to say to yourself.

(Jennifer)

That’s a good point yet.

(Trish)

 You really need to get the negative talk out of your head. Caregivers are doing a job equally different in a different way to healthcare providers. We are fighting for these people and I don’t like the word fight in regard to caregiving on a day-to-day basis. We have challenges, no we’re actually fighting for these people right now. 

(Jennifer)

That is true.

(Trish)

 Just as the caregivers and they out will ease off. That’s I think that’s something else I really wanna say to caregivers, we didn’t expect it and we didn’t want it. It’s caused fear, anxiety, and frustration. We’ve had challenges like we never would have anticipated. But this is gonna end. We just need to hang on. Somebody had said we’re on the same boat and then somebody else came out on social media saying no you’re not and that is true. We are not but we’re all on the same river and we can fight the current or we can flow with it. Trust me. The flow is going to be a whole lot easier,  part of that I think is trying as hard as it is to let go of the consciousness that this isn’t going to end, it is. I don’t know when, but we’re gonna get through it, and there are people like you doing podcasts to help them. There are people like me talking to you and you know I just I think it’s really important for people to know that I don’t know hundreds of thousands or millions of the caregivers in this country. But I’m thinking about a lot of them. I’m willing to do what I can to help.And I’m cheering them on ’cause man this is tough. 

(Jennifer)

Yeah it’s- the messages I’ve gotten are and I don’t want to say heartbreaking but it’s you know it’s like I’m so glad I’m not in the middle of trying to take care of my mom at home and our whole routine has been upended. Because she was enough challenges as it was because she didn’t think she needed help. That’s why she got combative because the more help she needed the more she resisted. So that was getting to be ugly and I’m really glad we kinda just cut that off at about six months maybe eight months of combativeness, and then now we’re done. Because I kept thinking I don’t know how we’re gonna handle this when it gets worse so you know. I got lucky on that front but you know it’s scary when you think you know my mom has declined and she’s not going to get better just when the social programs open backup.I think people will might decline a couple of steps. They might come back half a little bit. I don’t think they’ll come back all the way but I like the streaming.

 I’ve had people say, Oh you know dad doesn’t engage with that which my mom wouldn’t have either but I’m wondering if you know,  God forbid I played opera for my mom that wouldn’t have gone over well. But if your parent was into opera or your spouse,  or Andrew Lloyd Webber, that probably  would’ve been better for my mom. Just streaming it because it’s so rich and you know it kinda does something to you. So it might be worth trying you know they’ve got the visualization that they kind of connect with on and off, but the music plane. You know we have an eighty-five inch TV, I let my husband do that when we moved and it’s been a blessing for some zoom socializations. Were doing a zoom what we call TGIF for our Rotary Club on obviously on Friday. There’s Zoom Games you can play with people that’s obviously not an option for people with memory loss but when you have an eighty-five inch TV and you’re talking to your friends that are just over there on the other side of town. You know they’re kind of life-size so its kinda nice. So I think care residents should definitely invest in smart TV’s. I may actually send an email to the director of mom’s memory care and see because when they renovated I don’t know if they changed the TV or not. And if it is a smart TV, they might wanna consider

00:30:04 – 00:35:08

You know when you do the facetime call, airplay it to the TV. I  think if my mom could see me big it might have helped although she was in hospital beds so that was a challenge too. You know it’s just you just gotta kinda keep looking for any kind of, even if it’s a half a solution is better than no solution. 

(Trish )

My aunt is in West Virginia and the other day , it’s a little bit more of a remote area, but the other day people who had horses brought the horses and they walked them to every window. So, the residents could see.  We just have to think; come up with the crazy idea and see if it makes sense. You know I mean we have to think outside the box. We gotta figure out different ways to do things and you mentioned the music. You know there may be a sound or music the person doesn’t enjoy. Maybe there are old CDs that you have that you can actually play CDs for them. My dad, I put on music from the forties and he knew every word of every song it was bizarre but music is the one thing that activates every center of your brain. So it’s hugely therapeutic, hugely helpful for people especially with memory loss to hear music. 

(Jennifer)

See my Mom was into  talk radio back in the eighty. And I am thinking you know if she was me fast forward forty years she’d probably love podcasts like I do listen to music too but I like to listen to other people talk. Because it helps shut my brain off and I think she would’ve liked that and I wish I had come up with a way for them to just stream my podcasts to her at night when she was in bed. Just she could hear my voice and that would have been something I would have worked harder at had she not passed away. Just to keep that connection, I don’t know if it would have helped but it would be worth trying. I think trying to find a solution is just as beneficial for us as caregivers as it is to actually find one.

(Trish) 

 Yes. 

(Jennifer)

If you keep trying, you know you’ve done the best job you can and if you come up with stuff that’s working that’s even better. 

(Trish)

You just said something I am a big believer in is that I think as long as you do your best every day then you won’t have regrets. People say, how did you go through twenty years without regrets? I didn’t do everything perfectly, man some days my best was bad! But I could walk away and say every day I brought my best game. Another thing I wanna say really quick, we’ve been talking group zooms which are great they fulfill one thing. But what I love with my aunt in West Virginia is I schedule zoom calls so my aunt knows;  they can tell her oh your nieces calling on this day. So It becomes something they can look forward to, so I mean I think if somebody is at home providing care and they have family members outside of the house, maybe they could simply make a  schedule for phone calls so not everybody’s on one day. Or it’s two a day or one a day or whatever. It becomes something that can be looked forward too, they can even put the schedule up on the wall to show that person. So like I said, there are limitless ideas just people need to let the ideas come. 

(Jennifer)

I think you just have to not be afraid to try them. I mean if you try and they fail, you’ve tried. Move on. Yeah, I tried a lot of things with my mom because at the end I’m pretty sure she had –  Her late-stage symptoms were not typical. And because she walked and talked till the day she died, I mean not walking so much because she broke her leg but she would have and that’s not typical. So it was very easy to when you’re in it and you’re so close to trying to help her to not see the forest for the trees for lack of a better sappy analogy. And now that I look back, it’s like, because my husband’s like I don’t know why you didn’t think that this wasn’t going to be the year and I’m like because her mother had Alzheimer’s and died at ninety-one. Now, my grandmother didn’t get Alzheimer’s until she was my mom’s age. 

My mom started twenty years ago so that makes a huge difference.And we’d always said, you know we rented out her house and my dad had investments and it was like we have to make sure this money lasts because if  it runs out when she’s in the very very last stages she has to  move on my house. They’re not gonna be pretty; I don’t want that and I’ve seen that happen to other families. They run out of money and they have to move their loved one home when their loved one needs phenomenal amounts of care.

00:35:08 – 00:40:02

So that was always my thought process was taking care of mom until the very end and I just didn’t expect the end to be where it was. But I tried all kinds of things and when she broke her leg I was like, okay I am ninety-nine percent certain this woman is not walking again. She’s not going to do the physical therapy and even if we did do the surgery, which wasn’t really a smart idea. She needed physical therapy one way or the other and I’m like she’s not gonna be walking.  So I had already envisioned outings with the wheelchair; I’m like she loves to watch kids we will be able to go and get closer and you know it will actually be better. Oh well. 

(Trish) 

I think you know you brought up really- you always bring up really important points. One is that I don’t think people realize the average life expectancy for someone with Alzheimer’s is between  ten and twenty years. Now there are people who live one year, but maybe it’s due to another pre-existing I dunno with the other thing that’s really interesting is and I heard this early on with my dad was diagnosed. Maria Schreiber said that one of the people taking care of her father had said if you’ve seen one case of Alzheimer’s, you’ve seen one case of Alzheimer’s. There is no typical. I wrote my story about my journey with my dad because it was anything but typical.The last time he was conscious, four days very past, he knew each of my sisters and my mom said something of specific relevance to each of us. He was at least twenty years into it so I mean he was still articulate. So, there is no typical and I didn’t write my books that I’ve written to say that this is Alzheimer’s for everybody. It’s just to say if it can be that way or the way it was for your mom for one person, then it can be that way for somebody else.

(Jennifer)

Well, my goal is to always try to find a tidbit.We throw out a lot of ideas and we talk about a lot of different things and people go away with one thing; I’m gonna try this thing Trish said because Jennifer said just try it. It’s like. 

(Trish) 

Amen!  

(Jennifer)

That’s all we need to do just. 

(Trish) 

It  can make all the difference in your day. That is true and like I said if it doesn’t work, you’ve tried I looked at videos and photographs on my mom from the last two and a half years. And I went to sleep knowing that I did a great job. I did the best I could and trust me there’s a couple of times at the very end like you said, the best was not very good. And my husband feels a little guilty because his last encounter with my mom was negative. She did not wanna get off the X-ray exam table or the x-ray table and he’s always been super good with her and so I called him and I said can you please come sweet talk mom off the table that sense really bizarre. And so he tried and he reached his hand out to her. She was ticked off at all of us because I tricked her onto the table. And so I just basically I left her line of vision because she was mad at me and I had to drive her back so I’m like I’ll just let everybody else deal with her so maybe she’ll forget she’s mad at me. 

He reached his hand out to her say oh, come on mom. Let’s get the heck out of here, yea you’re right. These people are – she kept calling them assholes. Yea all these people are all assholes, lets go! And she scratched the crap out of him and it hurt and it drew blood and he was like, he picked her up and plopped her down into the chair and steam was coming out of his ears and words he normally does not use were coming out of his mouth. And it was like whoa this is not good and he has like yeah I love it my last interaction with your mom she called me an asshole, well you know she didn’t really feel that way.

(Trish) 

 That’s just one moment in time. 

(Jennifer)

And he can laugh about it but it’s you know it’s still a little ding on the heart when you’re like geez it was always good with her and that was my last encounter. It’s like a bummer. 

(Trish) 

I’m going to say but she knew what he did for her. Even though that was the last encounter, she knew that and she wasn’t herself. And I’m not excusing it, it’s not okay but you know it’s hard.

(Jennifer) 

 But you know it’s like at that moment, it was like, lady there are people waiting for this exam room. Get off the table! It was frustrating and she’s swearing at everybody and calling everybody names. The whole situation was just negative and she picked the wrong day to upset him and it’s like it’s just told him to think about all the time when I was about ready to just choke and the two of you just got along like friends and he’s like I’ve always been good with her.  

(Trish) 

You know we all do the best we can but we have limits. 

(Jennifer) 

That is true. 

(Trish)

Even within those limits  we do the best we can.

00:40:03 – 00:41:56

And as I said, some of my best days were not good.

(Jennifer)

 I think caregivers are going to have more of those right now because we’re just in these crazy times and I would like to retire the word unprecedented. 

(Trish) 

I know but it is I mean, I really think that is true but yeah. 

(Jennifer) 

It is but when twenty twenty-one rolls around we’re gonna come up with the new words. 

(Trish) 

 Yes but you know we’re here where we are in the middle of the river floating down it. So we just gotta and we’re gonna hit some rapids. That’s for sure. You know we gotta stay on the day we’re on and not look too far forward. Just deal with where we are.  All we can do. Tomorrow’s gonna be different. I don’t know how hopefully, better. Take it one day at a time. 

(Jennifer) 

That sounds like a great place to end and I really appreciate it and Trish’s books are all linked in the show notes so you guys can finish listening to this and click over and grab that and make sure you look at her website to the resources because that sounds great. And just like she said, do your best because that’s all we can do. 

(Trish)

I hope I’ve given somebody one tip. 

(Jennifer) 

I’m sure you have!  

(Outro)

Well you’ve made it to the end of another episode,  I hope you thoroughly enjoyed it and got a lot of tips. I also hope you’ve had a chance to check out our revamped website. There are lots of new articles, resources, recipes, all kinds of information to help you on your caregiving journey. 

If you need quick tips or cute dog photos, make sure you’re following on social media and as always I’ll be in your ears again next Tuesday.