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

Self-Care Is More Than Bubble Baths & Candles

Self-Care Is Not Just Bubble Baths & Wine

00:00:00 – 00:05:09

(Intro)

Self care is more than a bubble bath or a glass of wine, caregivers frequently hear you have to take care of yourself, but they seldom hear how to make that happen. They’re also rarely offered the assistance they need that would allow them time for self care. If you want to demolish the feelings of guilt, overwhelm and bitterness, you need to learn how to become a warrior of light. That is the title of my guest’ book, Eileen Silverberg is a caregiver,author, and teacher of self care. She emphasizes meditation and Hawaiian practices, and after listening to this episode, you will have new tools that will help you find peace, happiness and form a stronger bond with your loved one.

(Sponsor Plug)

 This episode is brought to you by Caregiver Chronicles, a 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 into the show I thought I would give you some details on some of the courses you will receive 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 and 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 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 the Fading Memories podcast.

 With me today is Eileen Silverberg, she is the author of Warrior of light and we’re going to discuss Caregiver self care and why it’s important and why it’s more than bubble baths and candlelight. So thanks for joining me Eileen. 

(Eileen)

Thank you Jennifer, it is a pleasure to be with your audience. Thank you so much. 

(Jennifer)

Welcome. First tell me about you and your mom ’cause you’re still taking care of your mom?

(Eileen)

 Yes. My mom is still with us and of course through the process – through a huge process now she’s in a nursing facility. She’s very well advanced and cannot walk in and it was a decision, a  very difficult decision but a decision that was the best for her and eventually we caregivers understand that’s the case and what’s happening in your dynamic is the best thing for the caregiver as well. So then you can really give that attention and that love that they need at that stage in life versus just caring for the person and being seen as the person who is more defined. Right? Yes and its true and its because they dont know any better. So it’s that’s that’s the case. Yes. My mother.My mother’s from Portugal and I live in Miami and I had to move my mom from Puerto Rico eventually when she actually allowed it to happen of course, that was also a process.A process of five years before she figured out that she could not be alone anymore and I think at that moment she was probably in the stages of depression and one day, she just kind of said it without really realizing what she was saying to be completely honest because this is what happens.Weaker givers think that our parents or loved ones know exactly what they need because they’re telling you but they don’t know. So we get confused with that and I went ahead and I moved her, which was very necessary because she needed that person taking care of her and she was not being taken care of the way she needed to be and I moved her from Puerto Rico to Miami, Florida.

00:05:09 – 00:10:11

So of course, with that came readjusting to a new dynamic in the family, a house that was not her home although she always was on vacation here and she loved it but all those things. It my journey, Warrior of Light, my journey of realizing or listening to the shocking. Test the shocking diagnosis of dementia although we know is that shocking experience and how you think or you’re actually your brain says to you or you can make it happen and realizing that it takes way more than that you believe it goes on. Dementia, we all know is a progressive disease so it’s not gonna ever get better and we in the back of our head even though we know we’re smart people and we understand we are not yet fully educated on how progressive this is, it will not get better. It doesn’t matter what you do. You can manage it, especially if you manage yourself, you can manage the patient but I hate to call them a patient because they’re not patients just your loved one that’s why it’s so difficult. Maybe a patient, you have a more – a different way of looking at things. But when it’s your perso, when is your loved one, then you don’t know the right things to do.You confront yourself with so many feelings and It talks about my journey and many people believe oh it’s a book about dementia which, or outsiders or Lewy body dementia or what have you and the book talks about my journey but the book is about how to take care of yourself. So you can be better fit to care for that person you love so much going through dementia that was my challenge. This book, leaving these moments that were leaving I have people calling me and say, thank you for your book because I thought it was gonna listen to your story and then I realized this book is helping me get through these moments. I mean that’s what it’s called a guide to inner wisdom for challenging times and that’s what it’s all about. Yes. 

(Jennifer)

This is definitely challenging times for Alzheimer’s caregivers. I’m really grateful,  both my parents are gone because I don’t think my dad would handle doing virtual rotary meetings and not being able to go to lunch with his buddies and being stuck at home with my mom. No, he would have been like I’m out, I’m done and then my mom was in a care home and she fell and broke her leg and  this was right –  March eighth was the day she broke her leg. She went back to the care home on March twelfth. I saw her the twelfth, fourteenth, and the sixteenth and on the sixteenth they were like that’s it. We’re closing to visitors. We don’t know what this virus thing is going to be doing. So yeah. Go Away, don’t come back and I’m like, okay. And you know it then finally in California and it started raining and it was easy to stay home. My husband was the one going to the grocery store and I just felt like, okay well, I’ll stay home but you know after a week I was like this isn’t good and after about ten days.

 I was like I’ve been home. I haven’t seen people and I really feel like I need to see my mom and I had hospice for her which at the time I got the hospice because I’ve been trying to set up palliative care and that was not working and I don’t know if it’s the company. The company that does the palliative care took care of my dad when he was on hospice and they were great, they have not been great this year. So I’m not sure if it’s just complete overwhelm with this virus I don’t know what the problem is. So there’s another company that worked with the care home and they were recommended by a client of my husband’s whose mother-in-law is also there. So I’m like at this point I just need help – everybody needs extra help with mom. Mom needs extra attention. So I got hospice. O seriously did not think that two weeks later she’d be gone. Fortunately they did let us come see her before she passed away the day before so, you know. I don’t know because I haven’t checked. They did let us back in and made get the stuff out of her room so it’d bent over a month. And then I don’t know if they’re letting people in right now or not I keep thinking about emailing the executive director and asking. But it’s like I don’t really have time to go and visit with my dog like I’ve done in the past so I haven’t asked yet. 

00:10:12 – 00:15:02

(Eileen)

Here in Florida they’re not allowing it and in the facility that my mom is I am grateful that they’re actually taking the measures that they’re taking, although always seemed very difficult because no one has been positive. I mean they’re doing an amazing, amazing job and for that I have to say thank God. But you know it’s tough, I mean even yesterday I wrote up a post and people were concerned. Are you okay Eileen? And I said I am fine, I talk about you know it being more than four months plus and I haven’t had contact with my mom in person I mean I see her every day and we talk every day over the phone. I tried to make it as amazing as possible but I know I have not sat with my mom and she’s only you know she’s here. This is why I moved my mom here and it is challenging. It is very challenging, but we just need to know that things happen, and we have to just use our  inner wisdom to say, okay, how does this feel? And just try to make it better because other than that, if you  concentrate on that negative side it can really do a number on our mental health and our wellbeing altogether. So you know this is why I say there’s so many decisions we make and it’s so difficult and as caregivers we’re constantly second guessing what we do. And our self doubt just comes to chatter out there and there’s a chapter in the book I called The Tiki I called it, which is that interval always that doesn’t help you that is so negative and the more you the worse it gets. So we need to learn to be a little bit more responsible on how to stop it, I’ve always say think you’re having your riding horse and how you ride that horse, even make the move go they get back because you know the action of the movement plus saying to yourself well, there’s nothing you can do and truly think of your intention. Behind your intentions were, of course, loving your parents and loving that person that is not well.Maybe understanding that in my mom’s situation she needed to have higher help than the one that I could provide. It took a long time to realize, okay I need doctors constantly there. I need somebody who can give her the medicine.

 My mom was very aggressive as well,  she had lewy body dementia combined with frontal dementia on her hallucinations were huge and that medication to connect. They were not helping me here because they cannot guarantee, doctors cannot guarantee that we are going to do the right care. Not because we’re not capable but monitoring the prescriptions is important and I as a daughter of course if I see that after three days it’s not working, I don’t wanna wait a month. Why am I waiting a month, right ? And of course, they’re not going to change the prescriptions after three days because you assume when your mom is not doing better becasue once it gets to that point age. You realize it takes a moment there, maybe a few weeks even a month to say, Oh  I get it . I get why she has to be here and how they’re monitoring her while. So I always, always encourage each one of the people that follow me,  that coach with me. It’s taken a moment, breathe, and lets make a list , you know. Does she really need that higher assistance or not  and if that’s the case that’s wonderful and if you can’t afford taking care of your mom at  home, of course, they WANNA be home. Of course. Now, do they consider your home a home? Which is another thing to see so and tell me something Jennifer, I think that

00:15:02 – 00:20:12

You’ll probably relate. If you’re not going through what we have gone through and what we’re going through people don’t get it. It’s that thing that people say, Oh I don’t think it’s got bad. Okay. They don’t understand what it is what we go through.And they also don’t understand the  disease. They don’t understand the disease has stages. They don’t understand that when there was somebody else they’re truly trying to keep themselves together and is somebody new so it sparks another side of their brain so of course, they’re going to be for the most part very lovely. But when they’re with us they are wanting to be cared for as if they’re some kind of kid. You go to the playground to pick them up at the school, the kid is playing and the moment he sees you he cries. And you’re like what happened? Look Look I got a boo boo. At two oclock in the afternoon and I’m like why are you crying right now? Because you’re finally here and thats exactly what happens. And when you see it that way and you give it , not that you’re laughing at the situation but when you see little children going in a different stage and  you can relax and say, okay how are we gonna handle that situation?

(Jennifer)

 I just read about an article why does my loved one act better for other people than they do for me ’cause that is a seriously maddening situation. And then it also causes people to say you know, Oh I don’t think your mom’s that bad are you sure she has Alzheimer’s? So they’re second guessing what we already know because they’re not seeing it and a lot of it is because we’re the impediment to our loved ones what they wanna do, so we’re the one where the enemy. We’re the ones saying, no no, you have to take a shower today or you need to eat this or you need to go to the doctor. We’re not the fun person, it’s like we’re not the fun parents. 

(Eileen)

Right and in the brain that’s part of how they react. Yes completely I mean, there are the people that are not allowing me to do the fun things I want to do and part of my self care plan is learning how to be that person. 

(Jennifer)

So how do you suggest people do that? 

(Eileen)

Okay. So yes, that’s hard. 

(Jennifer)

 That’s okay. I have found between my own experiences and all the people I’ve talked to is most people they get that emergency call or all of a sudden now, dad can’t be by himself. Or you know we all embark on the caregiving journey with the best of intentions and I think the least amount of information. Because we always assume it’s my mother, it’s my dad, it’s my spouse we can you know, it’s my responsibility, we can handle this. And the next thing you know you’re up to your neck in holy toledo and you’re kind of drowning, and so one of my goals is to help people realize like if they’re diagnosed or their loved one is diagnosed and they’re in the earlier stages is that you need to know what the later stages are like so you can kinda work your way backwards and say, okay while I think I could take care of my mom or my spouse until this part. And maybe you’ll be able to go longer. A lot of people think it’ll never be able to do it and there’s things I know I did with my mom that were like seriously, I’m actually doing this? And it’s just you know I think like I said, I think people, they embark on caregiving with the best intentions for their loved one then like and they end up drowning because we don’t make a plan for our own needs and care because I don’t think we realize how much we’re going to need to do that. 

(Eileen)

And that’s the tricky part  and I don’t think that anything there explains to us, many of the books that we read are beautiful and keep the memories going, which is important. Super important,  you know do it with love of course, you know that’s important too but they don’t go into this is what’s going to happen and you better have a plan for that situation. So my book talks a lot about that. But I go into it and I call it  a plan and preparation so it like what you are seeing right now, what you can expect and you may not, but you have to know what you can expect. And if that happens how would you want to pursue and then write it down. I always say have it written down somewhere.

00:20:12 – 00:25:06

So when you’re in chaos that’s not the time where right brain is going to give you the most creative answers and your left brain is just going to stop and be angry. So you know you have to do it ahead of time. So I tell everyone, you suspect your parents are having a difficult time, stop and sit down and make a plan, a simple preparation plan because they may tell you there are at the beginning stages when they can’t figure out they’re in the beginning stages there are usually in the mid stages. 

(Jennifer)

That’s true.

(Eileen)

 Yes I agree with you in that so much, I read your posts and I’m like yes thats true! How come nobody tells you that, even the doctors. At the beginning they told me she has beginnings of Dementia. I thought okay. That’s not – I  forget my keys too. No this goes beyond that. I mean if somebody has to sit you down and you probably didnt want to but you have to tell them what’s coming. We need to be prepared. So I always say expect the challenge and prepare for the challenge. What are the challenges they may not be able to walk, like my mother? So if  they don’t walk, do you really want to keep it at home? How are you going to change them? How are you gonna shower them? I mean all those things need to be thought out and nobody wants to think up those things but because you start with so much intention. But with you youre parent is gonna be great and I think that is something that we need to let go and because we take it personally. Taking me out of the equation is so important. A we see our parents for instance, with my mother by now. I am jealous of the private care that you have who care and the very blessed that they have allowed private to stay because Dole Denison, my mom she-  You don’t understand this change for her, the private does not have life.She gets tested ask anyone there in the facility so she’s always with my mom and she loves  her and people ask me are you jealous of lady.

 And I said, no, this is really important you understand that there’s going to be a moment in time where your mom is going to create a connection because they feel safe and you want them to have that connection.You want your parents to feel safe and hopefully it’s not with you only because that means if it’s only with you, you cannot do anything. That’s where self-care comes, then you can take some time to be able to say what do I enjoy doing that I haven’t been able to do and that I needed to make me feel happier. And just make a list of five things you may not ever be able to get the five things done but if you get to do two of those are the meaningful moments that we have to sit down and say ahh. And I’m not talking about the great things like going dancing .For me going to dance class but getting  a cup of coffee in the morning without stressing about breakfast or the dressing or whatever it is. That was a moment that was not for me but for my loved ones. I think the moment you decide okay coffee’s really important that I have it and enjoy that cup of coffee maybe because that’s your prayer time or maybe because that’s the time that you actually look at your flowers outside and are so happy to see them blooming. So then you wake up a little early. So then you play with it, you say, okay that moment nobody can take it away. I choose to have that moment as one of those mii moments of the right here right now I’m enjoying myself. Another one is showering if taking a shower becomes challenging when you have someone.

(Jennifer)

 I have a friend whose dad doesn’t like her to leave the room. He’s in an adult day program and then they were closed for a while because of the pandemic and then I guess they reopened on a limited basis and he goes back and that’s a lot of her time for her.

00:25:06 – 00:30:02

But when it was the two of them in their home together. Oh my goodness my poor friend was losing her mind and he has lewy body dementia. So when we have a full moon he gets even weirder.

(Eileen)

Yes that happens to my mom and also they get difficulties walking. You know they have this like they think they’re gonna fall so she will fall because her connection to the brain and the body its not he same as it used to be. And it took a long time to be able to prove that that was happening because when you go to the doctor and even if the doctor is great, it takes forty five minutes to have a conversation with you. Most likely when your mom is walking in front of the doctor it is not happening. It is happening when you’re going to Marshall’s and then she’s tripping every time she takes a step because she’s nervous because she’s self conscious because I’m paying attention to something else instead of her and then all the sudden she needs to go to the bathroom or she cannot walk the way she needs to walk. So all those things need to be addressed ahead of time and the side that – Imagine a car that has plenty of gas and you can go and you say, Oh, I can drive for two and a half hours without caring. Now when it starts getting to empty, you start realizing okay I can only go another extra mile and then there’s no gas anywhere close and then you panic and then of course, the car stops. I think that caregivers should be looking at themselves as a car that has that little arrowand have to understand that there’s no journey you can make without filling up your tank first. Because once it’s completely full you’re not going to worry. You may have to stop at one particular point to refill, but you will not worry you’re just going. 

You’re like, okay I’m refreshed I can go. But when that arrows is close to empty you worry and if it’s empty you cannot go. I tried to tell people when you of five things,  maybe two that involve money. If you have a hobby that you actually need to spend money on, like a dance class, going to the gym, all those things that you’re saying. But every time you pay for the gym and you cannot go it affects you and you get upset. Because of the money you’re putting down, you’re using and you’re not really going to the gym and that was your outlet. So you need to think is that that important , if it is, then you’re gonna take something that includes money and you’re gonna put it in your list and say this is really important to me because….Figure out why’s that important to you? I think that we think of self care as oh I need to self care because everybody else is doing it or because I wanna do my hair. No, why is  going to the gym make you feel better? That’s the question. So then answer that then I think that you need to involve something like the mini moments. Is that a cup of coffee, is it able to take a shower and when you’re in the showe, does that make you feel good? Then that should always be important that you put it there, and then you would put another thing that involves socialisation because what happens is that we’re so exhausted that we really want to get together with friends and we probably resent having those friends reach out to us. The truth is you do want to spend time with them but we don’t want to because we’re exhausted because we run out of topics to talk about. What are you gonna talk about, your mom and how she’s driving you insane right? So you decide well I’m not gonna meet with that person. So I think it’s very, very important that you define if having people around you is important and why. So the definition is if I had somebody walking to my house, who told me yesterday I’m gonna come visit you and that person would not show up, what would you think immediately? Did you think, thank God because I didnt wanna see you, not because I dont love her but because I don’t want to see anybody. I don’t even want to put makeup on or dress up. Or two can’t believe she doesn’t care for me.

00:30:03 – 00:35:03

Or three I’m so worried about her something must have happened. So which one is it? If it’s the I’m so glad she didnt come then maybe having a social ladder isnt important for your list, but if it’s a worried about her and wow she doesn’t care enough then having that connection with others, which I think is super important should be part. So now self self-care is not about putting a mask on or having your nails done or having a glass of champagne or wine with friends, and then how many how am I gonna have a glass of wine and then I’m going to be kind of tipsy when I get home and then that’s not gonna work out. No it’s about what are my needs and how am I going to fulfill those needs in a way that works for me and for my family circle. So when you answer this is good because of that, then you plug it in and what you do is at least out of seven days a week, five days a week you take one or you take the other one.Maybe if you go to the gym or dancing or a tennis class or whatever it is  or riding your bicycle wherever it is maybe they don’t have your cup of coffee. But maybe you do have two. Now once you have established that I tell everyone to move to decompression and that’s so important because what happens is okay I did that but I’m thinking about my mom I’m so worried.

(Jennifer)

I was like that. I go to the gym. I was not an exercise person until like about ten and half years ago. Then I went on a very large weight loss journey and through the journey of losing the weight I discovered a huge benefit of exercise was not feeling homicidal to my husband or my daughter or the weirdo on the street. And now it’s like if I don’t do some physical exercise six days a week and I have three golden retrievers so that’s pretty easy to manage. I get crabby and I’m just on edge and just  not fun to be around even for myself and I learned really quickly that if I went and visited my mom and I was feeling tense or stressed I didn’t even have to say anything. If I was just a little wound up, she’d pick up on it and instantly we’d go right down the wrong path. So sometimes, I had to like sike myself up if I was feeling tired or stressed, and I couldn’t reschedule when I would go. Then I would just be like, oh, it’s going to be the worst visit. Oh Blah Blah Blah. I would just envision the worst and then it was never the worst so that that always worked, which is a really strange way to get there. But Yeah, going to the gym, exercising,and walking the dogs obviously none of us are going to the gym right now. So we take long walks with the dogs three days a week and my husband and I ride our bikes three days a week. And then so I guess the dogs we walked four. 

(Eileen)

So you know that the beautiful thing that you say and that’s what you find in the book when I call it a guide of inner wisdom. We all know what we need. Your body tells you. You just said it, you actually did it when I’m tense, when your hands the body is saying please Jennifer I’m telling you there is something I need. And it’s not Jennifer who can come up with answers. It is that inner child that inner person that feels neglected so you need to say wait hold on. This is the universe knocking on my door and saying I’m going to give you something that you should pay attention to when your shoulders are tense. It’s because you need to do something about it. Instead of waiting until you’re collapsed. For me it was eating, I mean I was so tense my stomach will close and I could not literally eat because for me eating has to be a pleasant experience. We need to sit down and we need to  chat and this is great. But if my mom is stressed and then my mom is looking at me are you gonna eat.

I do a lot of spiritual coaching and I like to add mind, body, and soul to everything to every experience.

00:35:04 – 00:40:01

When they get to the stage where they’re losing their thing that caused me to get dressed up because we have a podcast or I don’t know I feel strange because she never calls me. Now we’re assuming something. So once that goes away, that eagles starts to diminish which happens with patients with the dementia of course, it goes away. Their filter goes away. They become very spiritual in a sense that they can sense, they can be more aware of things that you believe they’re not. They can hear better. They’re hearing is not perfect, but if you whispering, she goes what are you talking about? Their senses are enlightened, that’s what I like to call it. So we need to know that too. So we don’t whisper in front of our parents, that’s part of self care. Why am I gonna talk to people whispering?  Because she’s going to catch on that and when she does, she’s going to question you. She’s going to be upset, and then that will create those kind of moments.

 So it’s best to advise people ahead of time, I’m calling you at this time so when you come visit mom, you will know that this happened and I’d rather not talk about it in front of her because I know that’s a sensitive issue for her. But I want you to know. So right there you put it there then when you come to the visit lets make a pleasant visit for mom and for everybody else. So that’s one thing. The other thing that I as we’re picking apart things for selfcare, once you determine that he needs to be present is important and I always say, even during the shower I want you to be present. So okay, I have this five minutes to take a shower I’m so thankful because I can feel clean, because it’s quiet, because I love how the water goes through my body, I love the smell of my soap or whatever it is that you use. I love to scrub and scrub, oh I’m so clean and I’m so thankful for the water. All those things are exactly what you need to center on. The same thing I’m at the gym, I’m building my muscles. I’m going to lose weight. I will look great.  I’m getting to my ideal work , I’m filling my hamstrings and getting so strong that way is your time and if its an hour you took for the gym that is your time. It’s not I wonder how my mom is doing with brother, sister, person who’s caring for her or by herself. And that’s what it’s not selfish because the moment you get to do that and you feel like okay at least I took ten minutes to shower without interruptions then you can say, okay, I’m gonna go take care of my mom now. Now, that love that was at the beginning of the equation we all mean well. That love factor is there again, every time we fill our cup, there is juice, water, tequila, whatever it is. Coffe or whatever that is that cup theres is some liquid in there that you can actually give some to the person next to you. If there’s nothing in that cup, you can offer the cup, the cup is empty. Imagine you offer an empty cup and they go what the heck there’s nothing in here and then theres going to be a fight. 

(Jennifer)

So an idea while you were talking about the gym, my mom loved to watch kids. And I think this – I’m gonna ease into this one sideways here. I think it would be really helpful if corporations not only had on site child care but they had onsite elder care and it would have been really awesome if my gym had like an area in the childcare, my mom can just have gone and sat. 

(Eileen)

Yes. 

(Jennifer) 

While I did the class I didn’t actually need that because after my dad passed away, she moved into the memory care but, there was a little short period of time while he was in the hospital that would have been really really beneficial. So I’m just throwing ideas out there right now. Because we’re in a period where I think a lot of things are gonna change hopefully.

00:40:02 – 00:45:13

Hopefully, we’re not just going to be sitting at home zooming with everybody for the rest of our lives. And you talked about socialization. My husband and I at the very beginning, we’re in a cycling club, and at the very beginning of the crisis we were like we’ll just stay home and like I said, it was raining and you don’t road cycle when it’s raining unless you would like to end up in the hospital. And after a while I, put my bike on the trainer because I’m like oh I got to burn off  this stress and then it got nicer and so the two of us started going out which was great for him because he hadn’t been cycling for a long time, he’s had to take his bike to the shop and the guy had it for a basically two weeks. And so I had to reconnect with our group. We ride socially distant and we don’t know when we stop and take a break everybody is six feet apart, but it was like I really needed to be with somebody other than my husband for a while even though there’s not a lot of social interaction because you’re pedaling. But you’re just with other humans even if you’re not talking and that’s really. It was interesting how…

(Eileen)

Social connection is really important, and although I do gve the option to everyone and I said if it’s important to you answer these questions so you will know, usually there’s never that oh I’m so glad that person didn’t come unless you’re just exhausted. But for the most part yes. You crave to have a moment where you can sit with your friends and chat about whatever it is and we forget that we get so stressed. And sometimes even subconscious of I don’t have anything else to talk about except my mom you know what, it’s okay. If that’s all you have to talk about at least you can talk about it with somebody else. 

(Jennifer)

Well you can ask them what’s going on in their life because people always like to talk about themselves. 

(Eileen)

Yes exactly and it’s a beautiful interaction and what you realize is that there is people that really love you, that really really missed you, that really really wanna be with you and by taking yourself away from that interaction. You’re only hurting yourself. So choose your good friends you know that will be a good time. This has been a good time to like you said know to think of those things. Yes. We can all be together having dinners together like we used to. But what can we do? Can we go bicycle riding? Can we walk? Can you walk from one distance than the other one at least we see each other and we just wave and say how you doing? Tell me how’s your son that couldn’t graduate? So right there you’re connecting,  connection is so important for our well-being definitely. 

(Jennifer)

There’s something really simple people can do, our best friends daughter-in-law works in a daycare. And she got exposed, their ten month old, she’s now almost a year. Her ten month old granddaughter got exposed and their son got exposed. All three of them ended up with covid. And of course, you know I’m thinking oh my gosh you know I don’t know, first off I don’t know how two sick parents take care of a sick baby.No thank you. And I wanted to make sure that she knew that she knew – they’re in  Virginia and we’re in California so my friends are here.  The sick family members are fine now are in Virginia so about every other morning about every thirty six hours, I would just send her like a funny little Gif. I would text it to her, I just wanted her to know that I was thinking about her but I did not want her to feel pressure. You know if you just text some how’s everybody doing? You know it’s just it’s like one more little burden or maybe she was maybe she’d put it out of her mind for five seconds and now I’m bringing it back up even though she probably never put it out of her mind. I just you know it was like I would just send this little cute funny things that required no response, just so she knew I was thinking about her so that’s something we could also do for caregivers. Just a good morning. Here’s your funny dog photo or whatever you know whatever would make them smile. I just went into giffy.com and it was really easy to just text it to my friend and then she knew I cared. 

(Eileen)

Yes, and that’s so sweet. That’s very, very sweet, I had a very dear friend one of my best friends who’s husband passed away years few years ago, and that’s one of the things that how do you treat someone who’s grieving and clearly you don’t know what to say. Don’t say anything and I will just definitely do the same thing.

00:45:13 – 00:50:02

I’ll just go grocery store to the grocery store buy whatever I knew she loved.Some blueberries and this and that and text her I’m gonna leave some blueberries and this and that because I saw them they look so good, you should have some. And sometimes she will say, well no, don’t go come in. We didnt have to talk about how are you feeling, did you sleep last night, but it was about the blueberries and sometimes it was like oh thank you so much and yes, she always said thank you for caring. And those are important things that we need those as caregivers. Yes. That’s exactly what we need, that little touch.

(Jennifer)

 The other thing that we started doing probably late April early May when it was still cool enough. Standing outside wasn’t fun. Our favorite frozen yogurt shop isn’t far from where we’re at so we just walk over. They would drive over and we would all stand six or eight feet apart and eat our yogurt and we would you know we would literally socialize for the amount of time it took to eat the yogurt. So twenty or thirty minutes tops. So that’s also you know obviously hopefully someday, we don’t have to do it socially distant, but that’s another thing you know if there is someplace close you don’t have to have -it doesn’t have to be a big deal. It could be just something simple that people enjoy like you said the blueberries I think I think those are all really really good ideas.

(Eileen)

 Yes there are really good ideas and the frozen yogurt kind of made me very very hungry. aming  It sounds so good. Yes. That’s exactly yeah, that exactly what I can do.  My friend was talking about she lives in an area very close to key Biscayne under this ridge that goes with the water. So for a moment there we will say, okay, we’ll meet downstairs, I’ll  park and I’ll meet you. I can see you from this sidewalk  and we’re walking the bridge together. Were not really hugging, talking, we’re not saying, okay we’re going to go after for breakfast which we used to do before but that walking together the bridge became important.It was like, okay we still can do that and see each other even though we can have that much contact with each other. So that’s another thing that we can do the biking, the walking, it’s always good. 

(Jennifer)

You have suggestions on how we can incorporate our loved ones into some of that socialization and exercise? Like I said oh, it’d be great if my mom could go like quote help but the daycare,  at the gym. 

(Eileen)

Yes, as I said Ilove taking dance class and my mom knew that because I have taken it for many many years. And I started to take my mom to dance class. At the beginning I said oh my Gosh, I wanted this to be my time, and then I’m going to have to worry about my mom sitting there looking at me. She enjoyed it. My mom loved to listen to the music. She will just sit there and just enjoy watching me dance. Now I made a mistake, once and I never repeated it again and I like to talk about my messes so people can learn from those and perhaps you don’t have to go through mess yourself. But she actually loved to dance too, actually I went and said come on mom dance.  She was so subconscious that she got mad that I did that. So unless the person you really feel like they can dance and you offer that you want to dance with them. Other than that it’s not good to take them to a place and expect that they’re going to perform. So that’s one thing. Take them. Another thing is exactly , if you have good friends. Say to them, I would love to join you but I need to get my mom with me. Is that okay? Most of the time the person will say of course and then bring your loved ones along you know. Be prepared if you need to have a conversation with your friends or whoever you’re meeting and say listen I, actually have to cut the meet ahead of time or whatever because my mom doesn’t know. So hopefully you understand. They will say of course, don’t worry about it. So that’s another thing. Prepare your friends and take your friends to outings as well. Another thing that I think is great too.

00:50:03 – 00:55:07

If your your loved ones love to people watch then go to a park and sit with them. Bring whatever, bring a mini picnic and whatever they liked to eat and make it a date. Oh my gosh. Have a little bit of juice with crackers that I bought. We’re going to go through my favorite spot. Let’s see if you like it. You go and sit there and just watch people, watch dogs, if they like animals then go to the pet shop. Go and look at the doggies through the window and do that with them, one of my favorite outings and and it took me a while to go back to the pet shop and feeling happy. You know it took me a long time because that was an  adventure I will do with my mom on Sundays and I actually made it that kind of thing. I was like mom do you wanna go with me to the pet shop? And she said but of course, thank you because no body wants to go with me. And you know I love the walk there and I like to look at the different foods that they have for the dogs. Maybe I changed their food. I would like to buy a little bit for the dog. Maybe you can help me pick one.Yes, of course, we will do that every Sunday. I will just buy a mini bag of food for my doggies and that will give us an outing to do and she loved it. 

Another thing we used to do and I think is beautiful is having icecream. We’re going to go have a little ice which you love. I will make it a big deal. It wouldn’t be just like, okay let’s just get ice cream. It will be like guess what I have a plan , I have to do this but before doing that, we’re going to go have ice cream. Maybe it ends up that after that ice cream there’s no chance that we can get to the other place. So be prepared  to not do that but at least make it really enjoyable that little moment so it doesn’t  have to be huge but  those are some of the experiences that worked for me. And they worked really really well. 

(Jennifer)

That’s what I would do with my mom. We would go to the park and watch kids. We’d go to the swimming pool and watch kids, and in my city, there’s a splash zone so the water comes up out of the ground and it’s got these metal built-in squirt guns.  And oh my  gosh the kids love it and when you sit on the benches around it,  part of you at least like your ankles get cooled off and she loved to watch the kids. We could  watch kids for an hour and a half. I was like, I’m so bored but I would bring something to read or it was just a time to just sometimes be that with her quietly. It was always after lunch so I didn’t always bring a snack and the last time we got ice cream was kind of a disaster because this was this past summer. So about a year ago – No i actually think it was November. She was getting to the stage where she was forgetting how to eat. So she’d have the ice cream in her hand. I think I got a child size scoop in like a big cup to contain the mess and she’s like waving it around and it’s like eat it. So when they started having problems eating I learned quickly because we were moving and I thought, okay I will go and grab mom and have lunch out for our visit and then go back. 

But because we’d had such a horrific visit doing that on December thirtieth I was like one day I was like oh forget it. I’ll just take her with me and I’ll have lunch and  I’ll go and pick her up after she’s eaten then I don’t have to stress about is she eating? Is she getting enough nutrients in her body you know and because she would make a mess,  push the food off the edge of the plate, and then she’d spent an inordinate amount of time straightening up. I called it Alzheimer’s OCD was like oh there’s crumbs on the table and she’d spend like you know a minute straightening up like crumbs. And I’m like just eat. Can you please eat? The only time that backfired was when I went and I was starving and I went and I’m like they usually have lunch at like eleven thirty. It’s one fifteen people I’m starving and they’re still eating. So I finally said I’m just gonna come back because I’m about ready to die here. You know and I couldn’t take her out with me because she’s in the middle of her food so that was close to the end but once they have trouble eating, it gets more challenging. But we went to the library and watched kids.

00:55:09 – 01:00:02

It got trickier in the winter because you know you’re not gonna go sit outside even you know I don’t know about Miami but at least in Northern California, it can be kinda cool and damp. 

(Eileen

Here in the summer, it gets really really hot and when the summer comes it is very difficult because what do you do outdoors? It was so hot and of course, they tend to dehydrate so quickly too so that that’s something to do to stay focused on.To make sure they’re not dehydrated because that’s not going to be fun. 

(Jennifer)

No, and they don’t like to drink water either. I would have my mom water like I’ll never forget the time she needed to do an ultrasound and they called and was like we need to have her drink at least sixteen ounces of water and then not pee. And I’m like please I can’t do that. I can drink the sixteen ounces of water but not the not pee part mlike make up your mind and I explained to them. I hated going to the doctor with her ’cause I always had to train them. You know my mother has advanced alzheimers and fortunately I got to the point where she thought I was her best friend. And one day clicked in my head that if I referred to her as my mother, she didn’t realize talking about her so I could have talked all kinds of things about her. Might of picked up on that but yeah I could just refer to her as my mother and she didn’t realize it was talking about her. So that was kind of a blessing once I realized that but I had to tell them all the time. She has advanced Alzheimer’s I don’t have control over how much she drinks or if you know if she tells me – if she stands up and announces she has to use the bathroom, it’s like it’s not you know. 

And this one particular day we actually did manage it because we had to drive twenty miles to the doctor, and so I just kept saying, oh the doctor wanted you to drink some water. Can you drink a little bit of this water and they just kept handing her the cup.And it was just far enough apart that it didn’t pis her off because the time before I kept reminding her to drink water. I think we were outside in the summer heat. She loved it hot. So  she wouldn’t like it Miami hot. But Northern California hot but not humid was fine. And I knew that she would you know that they dehydrate really easily and I should of just started bringing watermelon and stuff with me ’cause that’s so much water and. And  it’s hard to make a mess with watermelon, I mean you can get it all over you but it’s not like ice creams that makes a big mess. So that’s a you know a suggestion I’ve made but yeah, I kept reminding her to drink water she got all upset with me. 

(Eileen)

Yes.  I had that too for sure. It’s challenging, very, very, very challenging I have to say tha, this is quite comical, my mom still has an amazing personality and she loved to dance and she loved life. And she enjoyed singing and music  and she smoked he cigarette and she loves to eat and of course, if there was a party, my mom will have a drink. So I will tease her saying mom there’s some whatever it is, rum, tequila. I’m like have a little drink. And she will laugh and say everything is in the mind. She is so funny, I mean to this day how can she say that but I will say everything is in the mind mom. So if that’s the case try to use – their essence sometimes remains , you know if they were funny people. Even yesterday we were cracking up because I told her mom, through the phone, mom you look so pretty I love your dress. And she would say  I’m waiting for a gentleman.And I though to myself this is so funny. I’m like mom no wonder why you look so beautiful. She said the one the who looks beautiful is you and I said that’s because I take after your mom. Yes, we just have to be very flirtatious all the time. I don’t know where my mom was  in that moment in that world, but you know what I laugh about those things because What am I going to say, mom, there’s nobody who’s going to visit. What are you talking about? 

01:00:03 – 01:05:04

You know I don’t I never remember you have a boyfriend after my dad passed away I mean who are you expecting. But it’s easier to say, yes, somebody’s coming. You have to be beautiful, you smell good, and move on. So yeah, that’s that’s quite funny. 

(Jennifer)

I have a quick question since you brought up the phone calls with her again. My mom’s visual processing was so bad that I didn’t even attempt a facetime or zoom call with her in the two weeks from when they closed the residence to when she passed away. Becasuse I just knew from experience like I would like I said, I have three golden retrievers. She had dogs all her life and you know one of my one of my dogs is a senior citizen. One of them’s really young. So there was always something cute I mean they’re golden retrievers like doesn’t take very much to be cute. I would hold up my phone I’d be like, oh. Let me show you this picture of my dog Remmy, which is the baby and she like look everywhere but at the screen. Is your mom’s visual processing better than that ’cause? 

(Eileen)

 I’m going to give you the trick to it. I have it. The trick is to have someone helping her where to direct the vision, and if they cannot see, it’s just lets listen to their voice. So the lady who’s there with her, when she makes the phone calls made sure that she said look who’s in the phone right now. So first she’s I’m just on the phone she can hear my voice and then she says, if you look here, you can see her and I maybe may get expression. Hi mom and I put my face and there’s days that she could actually somehow she she puts her attention there and she can see something and sometimes I can tell that she’s just looking out there. So I just talked to her and I said oh mom I love technology I can hear you and see you, only if I could touch you so. But, yes they don’t see. Well it’s very hard unless you’re in front of them, and then of course, we all now somebody may come and say Betty’s here. They don’t know who Betty is so even if they’re looking at them, they can recognize. So yes. Yes absolutely. So it’s not only you, it is very hard. I just happen to have somebody who were excited in a way that if my mom cannot see, she makes it very okay. She doesn’t need to see she just has to hear.

(Jennifer)

 It would have been nice to be able to experiment with that with my mom because she would get very frustrated. I think she –  I mean obviously she passed away so she was in very late stages but she just seemed like she she didn’t want help and anything that was a challenge she just kind of just uh forget it. You know it’s like the attack my husband had over the hour long design appointment for his new website. You know all the questions and some of it he didn’t understand and it was just. You could just see it was like you could just see when he was done, like I don’t get this I feel like I’ve made a mistake and I’m freaking out. And it’s just it would have been really helpful if at point they could have just said, you know what? We get enough information to start. Let’s move forward. But with my mom, she would go from nice to frustrated to like combative and angry really fast and it was sometimes very hard to backtrack.

(Eileen)

Did she have lewy body dementia as well? 

(Jennifer)

 I don’t think so but there was – we were sitting outside in February and the sun was really warm and the wind was chilly. So between the two it was pretty pleasant, we were just sitting out there in sweaters and was somewhat protected and she’s pointed at this tree and she’s talking about this woman and Blah Blah Blah Blah and I’m looking at the tree  going I do believe she’s actually having a hell of a hallucination because I looked at it. I have lazy eye so my brain thinks I see double. Been this way my entire life. So it only accepts the vision one eye at a time so it’s like wacky. And if you know me really well or if I’m tired or I’m sick, you can see it.

01:05:05 – 01:10:01

And it’s just weird. 

(Eileen)

How is it that you see two? Tell me that again. I wanna know. 

(Jennifer)

Well with lazy eye my eyes would turn in, so if you do that you’re gonna see double.So they fixed it cosmetically. So I don’t have like wandering eyes and which I can actually cross one at a time, which is really super creepy. 

(Eileen)

My husband can do that! 

(Jennifer)

I’m not sure you’re supposed to be able to so because they didn’t do the surgery early enough in life. I was like almost four so it wasn’t like I was old.I mean not that I’m old now compared to my grandmother’s one hundred and two. Age is relevant. Basically, my brain had trained itself that oh I don’t know how your brain knows that you’re not supposed to see two of everything because if that’s the way it’s been your whole life that is normal but it just literally, it just uses the input from one eye at a time. So like if you’re using two monitors on your computer and you’re looking at one. And then the other that’s kind of how my brain works. 

So I have done – I don’t have depth perception that made it really easy to deal with my mom’s issue with shadows or different terrains like if you went from the sidewalk to the grass.You picture a cartoon character with their arms flailing. It could be flat grass and it could be mowed really short and you barely notice the difference but she’s over there out to pitch yourself onto the ground because the surface was different. It looked different or lord walking around shadows was so frustrating. Or puddles, puddles is at least one thing but a couple years ago we would go to a regional park where the trail is reasonable.I mean it’s not like hiking. You didn’t need tennis shoes. So I would ,thank God,she and I were the same size shoe. So I would just switch to my tennis, my older tennis shoes and we just walk up in the hills and it was lovely. But this one day she literally stepped around all the shadows and we’re where out there with trees like what’s in the background right now. It was like, okay. I might have to like fling you over my shoulder and fireman cary you out of here because you know I’m going to have to pee soon lady come on we gotta get moving here. And then I think we went back like two weeks later. It was somewhat overcast so there was significantly less shadows and she walked so much better. But like you were saying with your mom, she would watch her feet. And I was always afraid that she you know ’cause she would walk bent over at the waist watching her feet and it’s like. I’d be like, oh, look at the really pretty clouds and look at the bird or whatever was to get her to look up for five seconds because then she’d walked faster. It got to the point where it was like you know like I had people say, Oh, you should take her to the shopping center and look at Christmas decorations and we tried that in the one shopping center that was closest to us. It was like the week of Thanksgiving, I think it was after Thanksgiving they weren’t done decorating not that it mattered great. Great big trees and  great big ornaments and I’m like oh isn’t this pretty and she’s like looking all over the place. I’m like okay this isn’t working either and I learned that places that were really super stimulating even a shopping center in the middle of the day when it was dead no, no people shopping and  malls aren’t exactly busy or weren’t now they’re not busy at all. It’s like I would like we went to the fabric store one time and she spent all this time picking crap the floor which was making me insane and then I had somebody say you took her there. That plays overwhelming to me and I’m like, oh yeah. I guess it could be really overwhelming to somebody whose brain doesn’t work, right? 

(Eileen)

Their brains work completely different. 

(Jennifer)

It helps to understand that because like I would try to take her like with the last time we went to the fabric store I had something I wanted to accomplish there. And she kept picking up stuff off the floor which was freaking me out. So we left because  when she picked up a tissue. I was like no.  We’re out, let’s go wash our hands  and go get something to drink. I can’t do this. Do you have a last minute tip on self care? Like a last horah people to take away before we leave afternoon.

(Eileen)

 Yes. Yes, okay this is great.Gratitude is a way of self care.

01:10:02 – 01:13:26

We need to remind ourselves and be thankful for and grateful that we are not perfect. So by write it somewhere where you’re going to see every day. That it’s not perfection, it is your intention that counts. That’s all that matters. So yes, you’re probably your house is going to be attended the way that you use to, most likely you’re gonna make mistakes with your loved ones. You’re going to be frustrated, tired but it’s not about how perfect it went it’s how you felt because your intentions were pure. And that’s why caring, self care, making that list, trying to use as you go through your list go into anything for your body. Let’s go back into your spirit.  What is it that’s important, especially to you? Is it a morning where you take a yoga class, is it a morning that you journal. Whatever it is, do it and add it because that gives you a different way that gives you a little compassion to be able to deal with yourself. Compassion for yourself because the compassion for your parents  and your loved ones you’re going to have you that’s what is called loved ones with dementia because you love them. But you cannot forget to love  yourself. So write it down really big. You’re doing the best you can under really really harsh circumstances, right? Write it everywhere, remind yourself of that. Give yourself a pat on the back and make your list:body, soul, and spirit. All of it. Combine it. You need to have the three of them. Perfection is unachievable, it’s a myth and a trap and a hamster wheel that will run you to death. So I think that’s something we need to remember we don’t wanna be the hamster that are running the wheel.Let’s just say okay I’m gonna ride the wheel without having to be perfect and that’s it. 

(Outro) 

Such wonderful advice. Thank you to Eileen, I hope this was a very beneficial episode for you, and if it was please make sure to share it with friends, family, strangers, or whoever. And you know the drill at the end of every episode I ask you to check out the website, sign up for the newsletter. I haven’t asked you to rate and review the podcast in a while, and that does help new people find us. So if you could do that, I would love it. You won’t be sorry if you follow me on social media either, I post funny gifs, cute dog photos, informational slides, and more. There’s a lot of new interesting exciting fun episodes coming your way. So make sure you’re subscribed. I appreciate your listening and there’s always I’ll be in your ears again next Tuesday.