Loretta Veney discusses her mom, Alzheimer’s, and what the diagnosis meant for her and the family
Patricia Dubroff: All right. Let’s talk about Loretta Veney. Loretta, want to give us a quick rundown of your bio and your world?
Loretta Veney: Sure. My name is Loretta Veney, and I live in Clinton, Maryland, so I’m a little bit around the beltway from all of you or most of you anyway. I got … let’s see. If I had to describe myself as a caregiver, I would say I was one of those who got just a bigger surprise in 2006 when mom was diagnosed. I say surprise because my mother was the first person in our family to be diagnosed with Alzheimer’s. I think for many of us, it’s shocking to hear the diagnosis, but I think most people, many people may be, we’re a lot more prepared than I was. That’s one of the things that I’m going to focus on today with this preparedness.
As Don said, you try to learn as you go. The first thing that I tried to do was to learn everything I could. That’s really my first tip of the day. Alzheimer’s is such a singular disease in the sense that millions of people have it, of course, but every case is different in the sense of the behavioral challenges and all that. I could talk to Don for hours, and Mary too, but we’d all have different situations and experiences. What I think I try to come up with for my mom or just things and what I was going to focus on to be the best caregiver for her I could. Now, I had just one plot in mind when I figured out I’d be a caregiver. My sister and I used to have a joke. When I was a teenager, my sister was nine years older.
The first thing I knew was that whatever happened to my mom in the future, I would be her caregiver. My sister had a zero level of patience. Sometimes when there’s more than one sibling, you can decide who’s going to do what, but if you’re a spouse, you know it’s you who’s going to be that. In Mary’s case, that, and I realized almost immediately 14 years ago, that I had a lot to learn. Don just kind of struck me when he said that, I just really want to learn. Yeah, that was my whole thing. I’m sure they were sick of seeing me at the Alzheimer’s Association conferences because I went to everyone. Everything that they had, anywhere in Maryland, I drove all around to see and got on all the websites and just how to gather.
That is always my first piece of advice. One of the things that served me best, I believe, as I became my mom’s mom, was the fact that I had always documented everything that happened in our family. I was used to taking photos and I had all kinds of videos, and I just wrote everything down. I’m not sure, I guess it was just my school thing. I got my master’s degree in forensic science and it was all about investigating everything. So, I would wipe out everything people said, but who knew it would turn out to serve me as well as it did? That habit became most of the information for the book, Being My Mom’s Mom.
I’m going to be really honest and say, as I am with all my audiences if you will, that the thing that drove me to write this book in the first place was that I knew my mother was not financially sound enough to pay for her care. It was terrifying for me. One of the things I would definitely say is, when we’re talking about preparation, for example, is to make sure that we have enough, whatever our plan is for our loved one, whether Mary you’re going to keep your husband at home and how long you’ll be able to do, that kind of thing, is to first look at the finances and see where we are. If I didn’t learn anything, I knew that it was going to take more than we had. Quite frankly, that is why I ended up writing the book.
Just one of those, you hate to say it that way, but one of those selfish things in a sense, because I couldn’t think of what else to do, and here’s why. One of the things my mother insisted on was being independent. Another thing that Don and Janet, I think was … she’s living independently right now, but we don’t know how long that is going to be possible. If you have not had family discussions with relatives and other people who are going to help in the care, that’s another tip that I would say we absolutely need to do. Sometimes I love one who has different ideas about where they want to live or end up, where they can be assisted if needed, but yet still have some financial and living independence.
We have to make sure that we have the resources in place for them to do that. Because the last thing we want, Alzheimer’s is a horrible disease to begin with, and we certainly don’t want to come down that with not being able to carry out their wishes. So, I think that these family meetings, we have to be honest about what people can do and not do.
Patricia: Let me ask you this. Let’s get to like some logical things here because you have a lot of information. Your mom was diagnosed in 2006, and it wasn’t until when did you decide that she needed to live outside of where she was living before? When did that move kind of take place for you?
Loretta: She was living in a non-assisted living, we’re Episcopalian. She was living in an Episcopal senior living facility in Friendship Terrace. Some of you may know it, you don’t live that far from it. Friendship Terrace is right off of Wisconsin. She lived there from 1999 to 2009. In 2009, one of the things that were just honestly most disturbing about my mother’s transition from non-assisted living to this very frantic, we have to go right now situation, was the fact that it was not the Friendship Terrace management staff that notified us that she was needing more help. I found out from my mother’s neighbors.
What was disturbing for me, just honestly, was that Friendship Terrace would call you about bake sales and they call it relatives … something really cool, advocates or something, or something like that, and they notified you about everything. The only call that I ever got from them was that she had failed to show up for her appointment with the income tax people, and I was going to have to pay a fine because she didn’t show up, which was fine, but they never told me, for example, that my mother got all dressed up one morning and said she was going to work and left the building, when they knew she’d been retired 20 years. I never got a call. That was infuriating.
When the neighbor started to call saying, hey, they saw my mother throwing away brand new clothes with tags on them in the incinerator, and then secondly, she was sitting outside of the dining hall, which my mother never, ever did, and she was doing that because she couldn’t remember where her apartment was, and she thought if she sat there long enough, it would come to her. I went there all the time with groceries, but all seem to be well and all that. I worked right down the street at Fannie Mae at the time, and I could walk to Friendship Terrace. I saw her all the time but didn’t notice the things they were noticing because I didn’t live there. That was the start of it.
I got her, just luckily, into a group home about, at the time, 15 minutes from me in 2009, and that recommendation was made to me by my neighbor’s best friend. It was called Mamie’s Loving Care. How group homes work throughout Maryland, that includes Montgomery County as well, is the State of Maryland out of Baltimore, has a system of group home facilities that they rate that have different amenities and different price points, and I looked at what was best for us in that case. That’s how I started.
Patricia: That’s great. I think partly it’s very common for communities not to make that call [inaudible 00:09:39]. Not that they don’t have wait lists or they used to [crosstalk 00:09:42].
Loretta: They still do.
Patricia: But it’s almost like they don’t see it happening that quickly either, and it really does take, guys, a friend. When you’re part of a village, like we are [crosstalk 00:09:54].
Loretta: That’s it, and they talk.
… how people are doing and how they’re doing. What were some of the things that you realized you needed to do in order to change that relationship with your mom? How did you sort of circle back?
Loretta: That’s a great question. One of the things I was very lucky. The first thing you want to hand off, so to speak, is the financial piece. The one call I did get about the tax, where she had missed that tax appointment, and then the next call I got was that she had forgotten to pay her rent, which she would never do, and that’s when you know it was time to make the appointment with the doctor kind of thing, and so on. Luckily, my sister and I were both on her bank account at the time, and that becomes one of the hardest things I think for families to do.
I work with a lot of families since this book came out. The original book came out in 2013 and I just did an update that came out last year, at the end of 2019. As Sylvia said, it’s sort of the updates, and so much has happened between 2013 when it first came out and 2019. But what was consistent for me was just the financial piece. So, getting the living, making sure the living will is there, making sure all of the other documents are there. One of the biggest financial pieces you can have is to have the power of attorney, of course, for financial matters. That was probably one of the first things I did. Then you have the say, if you will, of how things are done.
I took over the checking account right away in, I want to say 2008, even before I moved here. So, we had all of that done, and then it became my responsibility to pay for the groceries and all those kinds of things. That was, folks, for some families is probably one of the most challenging things to do when parents don’t want to give over the control to the children. In some cases, that’s true for spouses as well, especially when it’s a husband who has a disease and they’ve always done the financial stuff. In our family, I always did all the stuff, the financial piece, so my husband had no idea what was ever going to the checking account. We were reversed in that sense.
When I work with female spouses, it is typically, that the husband doesn’t want to hand off the finances. That can be one of the greatest lessons and the things you really have to prepare yourself for. What do I need to do with the bank? What things are outstanding. Some wives don’t know, for example, that maybe their husband did a second mortgage on something. I know two cases where that actually happened, the spouse was unaware of that, so families go through that same thing. For peace of mind and success as you go along, depending on how much money there is, to tackle wherever it is that they’re going to be living long-term is to make sure that that money will last. I think that’s one of the biggest things.
Patricia: Okay. That was a big hurdle, and you guys actually were prepared for it because you already had your name on the account.
Loretta: More than I thought, yes.
Patricia: Then you found her a loving place to be for a number of years, and then what happened?
Loretta: She was at Mamie’s Loving Care for nine years. We’ve been really lucky that she’s had stability at all places. I tell you, I did not think any place was better than Mamie’s Loving Care. I would never, ever have moved her from that, were it not for the fact that, I don’t want to say I couldn’t afford it. I could, but it also meant I was going to have to work until my mother died in that case, and I think my mother’s going to live a long time. She just turned 91 in February. For Sylvia’s update, she had a very tough July and August. I actually am shocked that she has survived that, and I’ll get to that in a minute, but it meant that I would have to work probably 10 or 12, 14 more years. Unless she gets some kind of cancer, I really think, especially given what she did survive, I think she’s going to live to be a hundred.
I was paying about almost $1,500 a month from 2008 until 2018 and would have had to continue to do that. The reason for it was this, there is a program in Maryland called the waiver subsidy program. It helps families to have their loved ones in very respectable places, but having a little assistance too. Here’s the most valuable lesson I learned. I think we have a tendency to not want to take advantage of services because somebody else may need it more. When she was diagnosed in 2006, if I could do it over again, I would put my mother’s name on every single list that exists in the State of Maryland.
Because if you’re saying, if you’re looking at things, so if I said to Don, “Hey, Don, put your mom’s name on the list and you get the pins for when they become incontinent,” which they will, or you need this or you need a wheelchair or walker or whatever, and Don might say, “Oh, somebody else might need it more now.” No, no, no. Put Joseph’s name on the list now, because by the time they need it, then your name will come up. For example, when I realized how much money I was going to have to pay, as I said, it meant, and not a lot of people can take $1,500 out of their pay to support someone other than themselves.
So, I waited till 2009, three whole years, in 2006 when she was diagnosed, to 2009 to put her name on the subsidy list. So, it took eight years, three months, and a few days, but who’s counting? For us to make our way off that list. There were 23,492 people on the list in front of us.
Patricia: Yeah, and this is the travesty of where we are right now, that all this talk of how people are … the baby boomers and the aging, we’re so far behind for housing of any level.
Loretta: We are.
Patricia: Independent level to acute care. Unless she needed a nursing home …
Loretta: That’s a totally different category.
Patricia: Then that’s a different category, and she’d go through Medicare.
Loretta: One piece of advice I would also say, and for Don, in particular, one of the things that you learn right away, and this is something that you have to weigh, Don, long-term. The thing that they say, when they get into the middle to later stages, the worst thing you can do for a person with Alzheimer’s is to move them. So, I had a huge decision to make. When my mother’s name came up, I already knew what I was dealing with. I loved Mamie’s Loving Care with everything in me. The primary caregiver lived there full time. She lived in the basement. Then it was owned by this very respectable woman in Prince George’s County. I thought I was crazy for moving my mother, but then I went to look at the houses that accepted the waiver program.
That was why I had to move her. Ms. Mamie used to be in the waiver program, and then when her last person died that was in the program, she did not renew it. Just honestly, they don’t make anything on these waiver beds. It’s usually a bed and a double room, and my mother so oblivious, she has no idea she has a roommate. I went to see these … I only viewed three places, and this one is called Lifesprings Eldercare, and I didn’t think it could get any better, but they have an activities director. They have activities. She owns five homes. They do all kinds of things, holiday parties for the entire families.
They encourage all the families to get together and be friends, and God knows that has helped us during this coronavirus when all we can see is each other on Zoom, [inaudible 00:17:49] but you can cry with everybody else and you’d rather be going boom. Anyway, and so I saw them and I thought, Oh, this place is fabulous. It’s a single-family home. Don, if you’re not familiar with group homes, they have them in New Jersey as well. It’s just like anybody else’s private home, but the caregiver’s just wow. Gave me that wow feeling as soon as I walked in, and it was the best decision I ever made in my life.
I struggled with it, yes, because you’re always afraid of what you don’t know, but it has turned out to be the best decision I ever made. I can’t believe that I was lucky, that lucky twice. It just doesn’t get that way. So, she’s been there since, right before Halloween of 2018, so a little more than two years. She was middle to late, going into late-stage when she went there. She came around a lot at the end of 2018, 2019, because they had so much stimulating activity for her. In the first group home, I had her in an adult day program, thought I was doing something, sending her to adult daycare and she hated it.
Then they called me at work one day said she refused to get on the bus to go to the program. So, I took her out of it. She said she hated it. She wanted to stay home and read her book and she didn’t want to do activities. That was my life lesson aha moment. But moving her to this place, they do everything, and there were so many other people moving around. There are only six of them. I picked the smallest house. My mother does not like people, so I picked the smallest house. I think our largest facility has 12 people. That’s too many for my mom. It is just an amazing family. They sit around together and have dinner and lunch and that kind of thing. It is truly a family, so I just …
Patricia: That’s great. Super good. I want to focus a little bit more on your book.
I picked out a section that I think we all need a little bit of these days since we’re all kind of celebrating, or I don’t know if we’re celebrating, maybe we’re acknowledging that we have survived. Maybe we should celebrate that we have survived six months of this crazy pandemic. It’s called keep hope and humor alive. I’m just gonna read a little section of it and then talk about some of the other tips.
Hope is defined as the expectation of obtainment, confident anticipation of what is to come. It may not make much sense to hope for anything positive when it comes to dementia. There’s always at least one optimistic thing that helps you move through the day, and here are my top five Loretta-isms, self-encouragement, which I hope will be helpful for all of you. The first one is to focus on memories. The second one is, today may be better than yesterday.
Patricia: She goes in and talks about each of these in the book. The third one is the day is almost over.
Loretta: Almost over.
Patricia: I love that one.
Patricia: And the fourth one is, it was a great night.
Patricia: The fifth one is to take a photo because you can’t take this moment back.
Loretta: You can’t get that moment back. Absolutely.
Patricia: I just want to say that, particularly now that we’re dealing with zoom sessions and you were telling me earlier that your mom and you have had a couple of outside backyard visits, it’s a different ballpark and we have to be able to celebrate these smaller, significant moments in our loved ones lives because that’s what’s going to keep us sane, and the calmer we are, the more we can have a positive attitude with our loved ones, even though other things may frustrate us about it.
Loretta: Those five have become even more important during this pandemic. I went for 99 days without seeing my mother. They were locked down on March 12th, and my first backyard visit was June 26. I posted, I put on Facebook when they … they put it up the day before that they were going to open backyard visits based on something governor Hogan has said, and you had to sit outside of wear a mask. You had to sit six feet apart, even with the mask. Okay. I jumped on that phone and made an appointment, of course, I was the first one. It was the best day ever. That 99 days took a lot out of them too. They were used to moving around, doing activities, and she had aged tremendously that you didn’t see behind that glass when you were waving at her through the door or through these video chats.
The hope for me has become so much more important. Those taking the photos, I take a photo of everything my mother does. Here’s a really good example for you, and Mary too, I think because my mother took pictures of everything when we were growing up. You know how, when you make those ugly drawings, your mother would save it and put it on the refrigerator no matter what it looked like? To encourage us to keep going. I take a picture of everything my mother does because here’s how I get through the day. I focus on all the things my mother can still do and not on the thing she can no longer do. Here’s the thing …
Patricia: You could just say that sentence right over again.
Loretta: Sure. I focus every single day on all the things my mother can still do because if you focus on the things they can no longer do, that will kill you. Kill you. I could write two books on all the things you can’t do. Here’s how I handle it. I’ll give you one example. There’s a farm right down the street, you may have seen it at some point, Miller Farms in Prince George’s County is one of the largest working farms in the County, and their chef loves old people. They used to get on an activity bus and go to the Miller Farms and they would make cookies with the chefs. So, they picked my mother rolling out the thing into the dough, and then they cut up the cookies. Then when they get ready to go into the activities bus and go back to the group home, he gives them all a little baggage to take with them.
Well, by the time they get on the bus, my mother would at this bag and like, “Oh, who is this, it’s not mine.” She’s trying to give her cookies away. Well, I want to take a picture of her and the bagging, and I said, “You made those,” and then she would look at the bag. She said, “I did that.” Yes, and I cheer and clap like she always did for me. She gets that huge smile. She doesn’t know me from Adam, that we didn’t mention. She hasn’t known me since 2014, so this is year six of me being a very nice person. That’s my name. Whenever she sees me, she says, “Hi.” But she can’t tell you who I am or our relationship, but she appreciates the photos. There was one photo of my granddaughter and my mom on the Alzheimer’s Association website for more than a year.
And it was Easter Sunday, and my mom and my granddaughter were playing ball. The picture is, my mother has her hands out like this, my granddaughter’s throwing the ball. It is this beautiful action shot. By the time we got in the car, I show my mother the photo, and her hands are out like this. So she says she has forgotten all about it. It’s been 40 seconds, but she forgot all about this activity they were doing. So, my mother looked at me and she said, Did I catch the ball?” I said, “Yes.” She says, “Yay me.” She’s so proud of herself. So, I take the photos to inspire her. I just want her to keep going in her own mind, whatever’s happening in there because there’s still a lot she can do. I cried all through Christmas day because I bought her …
There are some puzzles called puzzles to remember. They come in 48 pings, like 60, 48, 32, and 16. I think 16 is the smallest puzzle they have. I bought her the 30 pieces one for Christmas. I had just come back from Paris, and it was about pairing, the Eiffel Tower was lit up in the back of this puzzle. I get it, not thinking she’d be able to do it, and she did almost that whole thing by herself. All of us were crying. The caregivers were crying, and then she’s pushing down the pieces. I’m bawling on this video. I hardly ever watch it because it makes me cry every time. Then at the end, she said, “I’m done.” Oh my God. It was amazing that I didn’t … I started the first piece, and I just bawled all through that.
It’s amazing, because if you had said to me she’d be able to do that puzzle, and she’s absolutely in the late stages at this punch. She says very few words now and all that. It’s been miraculous. The hope for me continues to grow, just to be honest. Those five things, I’ll look at them all the time. Today will know today will be better than yesterday and all that. I don’t know how I got through July. We spent July, she had three seizures, and seizures typically indicate that the Alzheimer’s is moving a little more, maybe causing even some more strokes in the brain. On her second seizure required five days in the hospital because she was out. It was eight and a half minutes long. The video called me.
I know exactly why they did it. They thought it was the last time I was going to see my mother. They had laid her down, and I could see her. They said, she can hear you, and so I started saying, “Mom, you got to be okay. I love you.” I know exactly that’s why they did that because they were waiting for the ambulance to come, but they just thought those were the last … because she has an ironclad DNR, so they thought that’d be the last time I could see my mom. Of course, the hospital, I couldn’t see her at Southern Maryland and so that was devastating. Then she never recovered from that, that seizure. When she comes home, she’s totally different. Not talking. Her legs were really weak, so that was already in a fall. Three weeks later, she falls.
She has a huge bruise on her shoulder, so they told me I have to take to Patient First to make sure she didn’t break anything, and Patient First said she was fine. The bruise was horrific, so they said, put ice on it, and that was it. That was a Tuesday, the 21st of August, I mean, of July. They say two days later, the radiologist calls us, “Oh her clavicle’s broken. You have to take her right away to the orthopedic person.” I felt like the worst daughter in the world that my mother now has gone two and a half days with this broken clavicle. I’m mad at myself that I didn’t … I don’t know. They took an x-ray, we didn’t see, but any case, so it went downhill from there. Turns out we never got up to the orthopedic. We ended up the next day, Friday missing our appointment because we decided … she was breathing really funny, and she had this huge knot, and I have a picture, golf ball size knot right here in the center of her chest.
I thought she had COVID. She was breathing, but she wasn’t gasping, but she was breathing funny. Long story short, she had, in addition to that broken clavicle, four broken ribs. Broken so badly that they were going to do surgery. They call me to say they’re going to fly her, fly her from Southern, Maryland, in Clinton, down the street from my house, to Washington Hospital Center, to the trauma unit. They put her right in ICU. They call the surgeon. The surgeon gets there, but here’s the funny part, and here’s why tomorrow really will be better than yesterday. He gets there. It’s 11 o’clock at night. He strolls in to do the surgery. They’re going to put a plate in to try to help her breathe.
But it gets there, he takes one look at my mother and he walks into the room in ICU, and she says, “Oh, hello.” The guy says, “Is this the woman with the broken ribs? They’re like, yeah. He’s like, well, she’s too happy to have surgery.” So they do nothing. He said I went back home. And he’s, “I’ve never met a person that happy before broken ribs,” so they did nothing, which was great, but also how she almost died because they couldn’t teach her and they were very clear. As a matter of fact, Southern Maryland said, you need to bring the DNR over here right now. Her oxygen was 84. She was almost gone from here for sure. She’d be dead if it were not for the fact that her caregivers at the group home, when she got out of the group home, when she got at the group home, I sat her all the down to 86 that night that they had walked in and her mouth was open, they called 911 right away.
She spent 24 hours at home and then went right back. We finally got control of that and that is why she’s still here. But the hope for me, I think all five of those things in the book, the day’s almost over, I just wanted that day that I thought she was dying to be done. I wanted whatever was to be, to be, and I wanted her not to be in pain. The guy said, “Either the Alzheimer’s is in the part of her brain that allows her to feel pain,” because she was only on Tylenol. He said, “She should be on every kind of opioid we have, the way they broke it. He said, “She fell on top,” so we’re not sure how she fell, but he said she actually fell on something and just crushed her. He said, “I understand why they thought we should do surgery.” They all named her the bionic woman. You should see her now. I saw her, whatever day … Thursday because Friday was too hot.
They canceled it, so I was her either Wednesday or Thursday, whatever day it was in the eighties, and I went on my lunch hour and down the street to see her. But she was in the hospital five days with the ribs as well, but I’m thrilled we did nothing. But I thought, sure, my mother would die during that timeframe because they couldn’t teach her to blow in that little thing to blow … One nurse in ICU spent 45 minutes with my mom, and she got her to blow into it one-time, but they were all fighting over her in ICU. They just, “Oh, we love your mama.” I love her too, send her back. Thanks. Send her back. And they were like, “Oh, she’s so cute.”
They read to her. She was so spoiled there. I was like, okay, we love her too. Send her back. But yeah, if somebody asked me if I thought she would recover, my answer would have been no, simply because she can’t … the one thing that she couldn’t any longer do almost killed her, that she couldn’t learn how to blow into this thing to blow her oxygen back up. They mostly kept her in ICU to keep her lungs from deflating because she wasn’t breathing so well.
Patricia: This is an amazing story you’re sharing. This is like, at the moment, this is all just happened, this is part of the book.
Loretta: I put a picture on Facebook that on August 9th, she had a sling and they were literally just pushing her from behind because she’s still learning how to move her legs with this pain from this rib that I guess she is feeling. Then August 17, the same caregiver, [Janet 00:32:08], the best caregiver in America, is now bringing her toward me. We have a virtual visit with the doctor, and she’s barely holding mom’s hand. Now she’s upright again and everything. In a week, she did get that in a week. The group home, for Don and for Mary, I think, Sylvia, you’re familiar with some of the challenges I’ve been through before moving my mom around from one picture to getting her to the doctor and stuff like that after my husband died. My husband drove my mother everywhere.
When my husband died, suddenly I had to buy a car to drive my mother all around. I did not know if your name is not on the title. You cannot drive the person’s car that died. I had this little cute Cadillac, and my husband had this huge SUV because he had taught her to get into. Well, we had almost a similar issue with trying to get her to Washington Hospital Center during COVID to get more x-rays to see how it was healing. Everybody’s charging double. I tried to get her … So, the doctor said, “Leave her in the wheelchair while she heals so that we give them the best opportunity to heal.” Well, that meant I needed a lift vehicle to take her to her follow-Up at Washington Hospital Center.
They wanted $400. $400 to go 18 miles. Are you for real? Because I have such a good reputation with the homeowner, they let the activities director drive me on the activity bus. [inaudible 00:33:24] the activity bus. I was so thrilled with the [inaudible 00:33:29]. Be nice to people because, one of the things I say, I did a presentation a couple of weeks ago about advocating for your loved one. I talk about what to do when things go wrong. Now, there were a couple of stories about how my mother fell. I said in my presentation, you have to choose your battles wisely because of the story they were telling, the doctor then said, that probably is not how it happened, because she clearly … they told me she bumped into the wall and they sort of held her up from falling going like … no, she actually hit the floor or she fell onto something.
Janet, the primary caregiver, she was downstairs and she was livid that she was not upstairs when it happened. Not only, who knows what exactly happened, but I wasn’t going to beat that to death. My mother still has to live there, and so we stood her up and they did everything for her. Janet comes running up and Janet is screaming, what happened? They tried to get to the bottom of it. I was just grateful for everything they did. I may never know the real story of … I know they didn’t hit her or anything like that. That was not on the card. I knew that for a fact, but sometimes you have to let stuff go, and because I didn’t falsify it and call her own and curse her out, which another person there did, over a different situation, and then the daughter turned out to be wrong, by the way, too.
So, I wasn’t going to do that. Then because I’ve always been nice and encouraging and all that kind of stuff, then she was nice enough to say, we will let you take Ms. Don … we will let the activity director take you and Ms. Dora. Hallelujah. It wasn’t the point that I didn’t have $400, but I’m like, really? You have doubled your prices because of COVID.
Patricia: Yeah, that’s ridiculous.
Loretta: Anyway, that’s the whole … We laughed all the way there. We had a good time on the bus and she still has a wicked sense of humor in the midst of all. The doctor says, “Every time I saw her, she was laughing.” He was like, “I’ve never seen anybody like that with four broken ribs.” They got a big kick out of my mom. She brought everybody joy that week, so I thought that was cool. It’s the newer version of the book, but it is certainly those, those five things still resonate every day, and that got me through July and August without a doubt.
Patricia: Yeah. One of the things in your book, in the chapter called, it Is what it is, which clearly is where you’re at now, is a note that you said you actually gave to your mom on an index card, and it says, “Dear mom, please read this card when you were feeling down and always remember, number one, I have your best interest at heart. Number two, I would never do anything to hurt you. Number three, I won’t force you to do anything. And number four, I love you more than anything. Love, Loretta. Even if she doesn’t can no longer reading comprehend, I think …
She can read. She doesn’t comprehend, but she can still read.
Patricia: That’s not part of their disease. I think it’s such a great way to acknowledge the kind of care your intentions are about. I think that gets lost sometimes with family. You don’t have the sibling issue anymore. You never had a sibling issue because you knew you were going to be the sole caregiver. For a lot of families, with multiple other family members that have to be working together, this is a great guide for them to sort of look at and say, “Look, this is what caregiving is about, and we have to acknowledge where we’re at, what our plane of comfort is too.
Loretta: That’s very true, because siblings, I work with a lot of families. I give out my number, my phone number in every presentation I do, everyone. And people think I’m absolutely bonkers for doing that. The reason I do, and the minute stuff started closing down in March, my phone rang all the time. I still work full time. I work for Homeland security. They are so okay with everything I do as … before COVID, I spoke all around the country and all that, and I do these presentations on Zoom. They’re very well aware of it. I’ll make up time if I’m gone. I get off at 2:00, so three o’clock is the perfect time for me. But they also know I have been entertaining calls from people, but mostly is about siblings who disagree. The person who has control of the money, one dad in one place, and the other siblings want mom somewhere else, and so the big fight.
But typically, the reason I didn’t have a fight with my sister of course is that yes, I was the primary caregiver. Then some of the blessings, and especially, I guess for you all, as the disease progresses, the decisions that you make also has to do with what you share with other people. My sister died of MS in 2011, and I chose not to tell my mother. Now, that when I say that, particularly in a church, it’s like, oh my God, I can’t believe you didn’t tell your mother your sister died. Well, one of the reasons I didn’t tell her that, I didn’t want her to remember … That’d be the one thing she’d remember, and then she would cry all the time. Then what would I do? I chose not to tell her.
When my husband died, I was much more worried about what she would do with my husband dying, then my sister, she hadn’t seen my sister in a few years, so she had clearly forgotten, she had two kids. But when my husband died, I thought my mother would be devastated. She worshiped him and he worshiped her, for sure. And she did a lot of things from my husband that she would not do for me, in terms of like eating and what to wear, stuff like that. So I was like, “Oh my God, she’s going to revolt. But she never once asked about him. They filmed his PBS special with us in it, like eight weeks before he died. When they told him that my husband had died, they were like, oh my God, the producers spent 12 hours in my house with him.
My husband cooked us dinner, all that. So, they dedicated the film to him. Well, a couple of months ago, I guess it was after the lockdown, they were playing the special, and my mother saw my husband who’s in the film, and he’s putting her in the car and putting the seatbelt on, and so she said, “There he is.” They were like, oh my God. They called me and said, “Oh my God, Ms. Dora saw the video.” And I said, “What did she say?” She said, “There he is,” but she didn’t say anything else after that. She just went … My sister and my husband died on the same day, five years apart, but she has never asked … not one word about my sister.
There’s a picture right here of my sister and the big pictures of all of us at my mom’s group home. If you asked her, she would say, she’s never been married and she doesn’t have kids, and that can be devastating for a lot of kids. So I tell her, tell her that’s the greatest heartbreak you’re going to have in your life, is one of your parents in particular, and your spouse, even worse, when they don’t remember you. My husband took it worse when my mother didn’t remember him than I did probably. I cried and cried. It was my 55th birthday when my mother didn’t remember me. That was the worst birthday ever. But you roll on with that.
I think that, as you said, is the kind of progression. That note I wrote, I suggest to siblings who clearly don’t get along and to have these family meetings and if a mediator’s necessarily, you can do that, but I’ve resolved a lot of things over the phone, just giving them some options that I think make it easier for families to decide, instead of the one person controlling all the things, have a discussion of what the options are before you make the decision, and try your best to make it as a family so that the best interest at heart is what … it comes down to the person who is in need, not the egos of everybody else.
Patricia: The other thing that’s really, I think catapulted since even 2006, is the amount of attention and available resources for folks, for families who have loved ones with Alzheimer’s and other forms of cognitive challenges. One of the gals that I’ve kind of gotten interested in following, her name is Rachael Wonderlin. She has some great little tips. She offers support to families. She’s currently doing, I think her book talks about the difference between delusion and just misremembering and how to make sure that one is actually something that can be treated with drugs and the other one [crosstalk 00:41:49].
Patricia: Then, where you draw the line in terms of what you believe your family member is saying or not because honestly, that’s your own self arguing with yourself. Once your family member can no longer remember those things, why dispute, who cares?
Loretta: : Very true.
Patricia: It’s a moment of communication as far as …
Loretta: That’s very true.
Patricia: There’s a lot of tips like that out there now. Of course, Alzheimer’s Association is very strong, the foundation and AARP. I was bike riding this morning and passed a woman going me who had an earbud in, and what did I overhear, but the word, Alzheimer’s for your family, and I thought, it’s like …
Loretta: Oh, man.
My favorite website is typically, other than the two you already mentioned, AARP and AARP caregiving section, if you have never checked it out, please do so. Mary, there are some very specific things on there for spouses, and Don, there’s a lot of parenting tips. AARP highlights their caregivers. They named me the entertainment director mainly because I’m always doing activities with my mom, and I have reviewed a lot of apps for them, phone apps. Don, we can talk offline too, if you like. There are some apps and things I can recommend, especially for people who are caregiving long distance, if you have some help in New Jersey, but I love that site that they have the caregiving, but I also love dailycaring.com. It comes in two ways.
You get an email from them. They have daily tips that they do, and they tackle some really, what I would call tough subjects that a lot of people don’t want to touch like sex after Alzheimer’s diagnosis, because don’t think it goes away because it does not. So, that’s one thing. Then also, their website is phenomenal. It is divided into tips and things, as Patty said, there’s resources, the whole link of pages to that, depending on what it is that you need. I’m always on Daily Caring. I have a whole section of the Alzheimer’s and dementia apps on my phone. I have a caregiving group of apps and an Alzheimer’s group of apps.
I have coloring books and puzzles online for my mom. My favorite, this is her favorite right now, check it out. Hold on. It is called Reef Life. It is an aquarium, and there are fish flying by. You can see them. You can change the color of the aquarium. If you tap on the screen, they come like, you’re really feeding them, just like you’re doing a real aquarium. The fish move faster. My mother will look at this four hours, so if they have a lot of anxiety and things, there are a lot of apps you can use where you can catch your breath, and Don, you can be reading something to learn to help your mother, but then they can be occupied and doing other things. So, AARP named the entertainment director. But if they can keep my mom happy, and most of the stuff you can get. Most of the apps I have on here are free. There is a paid version of that aquarium, but you don’t need it.
I showed you the free version. There’s Relax Melodies to help them relax and things like that. There are lots of things out there that we can do, especially if we’re not in the same room with them. But I think the most we can do for them is to provide relevant and up-to-date information, which you can get from this variety of websites and support groups. I moderate a group called Us Against Alzheimer’s, is a Facebook page, and I’m one of three moderators. We’re all different ages. Our youngest person was taking care of her grandmother and her mother, and she had two kids under the age of eight. Imagine her life, and her name’s Jesse [Perre 00:45:49]. Then the other lady is caring for a disabled son, but her mother had Alzheimer’s as well. She couldn’t go out and do a lot of respites because she also had …
He’s an adult now, but he was a teenager when her mother was alive, but he can’t be left alone. All of us bring very different situations to that moderating group, so whatever folks need, we can help out with that. Just asking, get some help for whatever resources you may need.
Patricia: Do you want to put that and your phone number in the chat?
Patricia: While you’re doing that, I’m going to open up and we have about 10 minutes left. Does anybody have any particular question you’d like to ask Loretta or I? Don you unmuted.
Don: I have a lot of questions. Let me start with the most overarching question. You mentioned books, emails, apps, websites, mediators, Facebook groups. I’m wondering how a person is expected to keep up with all this, how you keep up with it, how you keep all that information from the disparate sources organized.
Loretta: That is a good question. There are a couple of things. If you have a cell phone and you want to get on one of the app stores, the first thing I would do, and even you can do it just on a website and just do organizers for Alzheimer’s. For example, there’s a whole lot of books out there. This one is called The Elder Care Planner. I’ve had this for years and years, but what you want to see is, when you say, how do you organize? There are a zillion checklists here. So, medications, planning, finances everything’s in here. You don’t have to recreate anything. So, how you organize is to copy or tear out all of these lists that can help you keep track of everything you need to know, finances, medical appointments.
People use apps to schedule appointments. Say for example there’s one that everybody really loves. If you have other people that can help you, especially since you live in a different city, there are a whole lot of these organizer apps. For example, if Mary needed to go out and she’s going to have lunch with a friend at an outside restaurant and her husband needs care, so she could get on her little app and say, “Who can come over and sit with my husband while I go to lunch.” And several people see it, whoever’s in your network. Ben can say, “Okay, I can come over for two hours while you have lunch.” Then everybody else can see Ben has already answered, so if Mary needs help with the additional tasks, okay, also, my gutter’s clogged, who can do that? Then somebody else signs up.
How this is beneficial for families that is extraordinary is, some families get mad when you tell one sibling something and not the other. What happens is, if you take that to the doctor and you come back and the dad said, the doctor said dad’s blood pressure was high and they’re going to maybe look at changing the medicine if it’s not better next month. When you type that into the app and you hit send, it goes to all five of the siblings. Nobody can say you didn’t tell me, you only told Barbara. Everybody gets the same thing. When I did this presentation in Boston, and this was a few years ago, you could tell these siblings hated each other. There were five of them.
The oldest son was in charge of all the money. I started talking about this app, and they had decided to put their mom in this assisted living place where I was speaking. The son, the oldest son writes me letters, and later, and says, “Loretta, thank you for saving my family. The app is great.” Then he says, “We still hate each other, but we love the app.” I picked it up, oh my God. I bet to this day, they still don’t speak, but they all have … and there are several of these kinds that do it, Carely, C-A-R-E-L-Y. That’s one that a lot of people like … Caring Village is the second one. Again, and it’s not just about doctor’s appointments.
There is a secure portal. A lot of these doctors have portals now, so there’s a secure portal on there, so if you want to put the medical information on it, then certain people can see it. So like, if you didn’t want Mary to see it, Don, you could just let Mary see the household stuff. I can come over and bring dinner on Tuesday night, and you say, “Thanks, Mary.” But Mary can’t get to the portal part to see the medical diagnosis if you don’t want them to know your mother has a UTI, for example. The church people don’t need to know that, just the immediate family. There are things you can do to set it up. I think one of the ways I try to help families is to get them to use some technology, which could be more beneficial than you trying to do everything. But whether you’d like the paper version of some of these things, if you Google, it is called, let’s see, Springwell …
It is the Caregiver’s Notebook. Something like that, but Springwell is definitely the company, and it’s really cool. It has all the things we talked about, putting all the financial information there, particular resources, and you can have all your stuff in one place. You asked an incredibly valid question, how do people keep up with everything? I would say, I spend maybe an hour, and this is how I approach it, a day. I would say, I’m always looking for, what am I going to need next? On my slides, there’s a slide that says, have a plan and a backup plan. Suppose you wanted to say, well, mom’s on a Walker now, and my mother has the kind of walker that you can sit on too. So, I would have never been able to get her to Patient First to get that x-ray, and they didn’t help me at all at Patient First.
I had to get the clothes off and put her clothes on. It was crazy because again, who knew something was broken? In any case, so I didn’t realize that I should have been doing the wheelchair thing too, so I didn’t follow my own advice initially because my mother had never even needed a walker, even at 91, this was all new, nor had I ever signed her up for Metro access, which is the bus system around here as you know. It takes six months to get registered for Metro.
Patricia: Then people go in person to their office. Maybe now it’s Zoom, but it’s like…
Loretta: I saw you had to go in person, and I called, they weren’t going to waive that. I was like, y’all have lost your mind. There’s no way I was going to pay $400. Who requires an in-person visit to … Anyway, so have a plan and a backup plan. These checklists and these caregiver notebooks and things can help you … Oh now, so what I do is now I’m always planning for what’s next. Okay, I got her the walker. It was given to me actually by one of my friends whose husband died. It’s a Buick, it had hardly ever been used. I have that, but now I’m looking for the next thing. If I have to get a wheelchair for her lady, like the wheelchair belongs to the group home, but if I have to get one that she will own, how do I do that? You always have to be planning for the next thing.
Patricia: You should be aware that pre-COVID, and I think they’re back to having some access, there are several libraries of equipment in the area. I know Leisure World has a big one, I think has a big one.
Loretta: They do.
Patricia: It’s really not necessary to buy this stuff over and over. It’s usually pretty available. Also, through the villages, if you’re not familiar with village programs, we can talk about that another time, but community villages can be super resourceful.
Loretta: That’s awesome.
Patricia: It’s just amazing. I want to thank Loretta for so much great information. Do we have time for one more question?
Patricia: I know we’ve got time.
Loretta: Absolutely. I’ve got time.
Patricia: Mary, did you have a question you were about to ask? You look like you were. No? Mary? Oh, wait.
Mary: Okay. No, I just wanted to thank you, Loretta, so much. You are an absolute fountain of information and so charming and delightful.
Loretta: Thank you so much.
Mary: You have enlightened me greatly, and I may reach out and be in touch with you, although I just talk with people doing the same thing, so I don’t want to take advantage of that.
Loretta: No, it’s perfect. Especially, one of the things, Don, I know that this can be overwhelming, when you’re just starting out, especially to the realization point that, oh, she’s going to need extra help. The more you can start to look around and more choices than everything you’ll have. That’s the best. You don’t have to select right away, but just start to see some of the things that were out there. As I said, I made the biggest mistake I ever made, was not signing her up for the things that I thought she would need later. I just thought, oh, other people needed more now. I will put my name on the list to pick up space. Wow, that was the worst decision I ever made. She could have really suffered because of that.
Especially, with right now, worst-case scenario, if I didn’t work for Homeland Security and had lost my job in a retail place or in a restaurant or something, my mother could be homeless. We have to understand the ramifications of every decision that we make or not make as the case, and so I tell everybody just sign up for everything. I don’t care. Even if you think you’re never going to use it, put your name down there, because then you can always say no when they call you. Your name just came up. You just say no, I don’t need it right now.
Mary: Yeah. So good advice.
Patricia: I’m going to put in a little promo here about the events that we have coming up next. I’ve been trying to switch all of my life activities to Zoom, and it’s fun because I attract people from different places, I think. Our next event coming up is, what’s your plan?
Loretta: Oh, there you go.
Patricia: That’s an interview with Steve Lorberbaum, who’s my boss and the owner of Assisting Hands Home Care, with Susy Murphy, who is the director at Debra Levy Eldercare. That group is amazing.
Loretta: They are.
Patricia: They’re managers. They have just amazing staff.
Loretta: Steve’s pretty awesome too.
Patricia: Yes. He said to say hi. Then on September 14th, we’re doing yoga for self-care. Marie Daly from CaringMatters [crosstalk 00:56:48] volunteered to work with us, and we offer this yoga class to anybody who wants to come. It’s very lightweight and informal. She does a great job of just getting you to acknowledge that you have breath in your body.
Loretta: Oh cool.
Patricia: Which is what yoga is all about. Then of course I’m continuing Death Cafe which is an international program to talk about death and dying in a non-political, non-religious way. We usually get 15 people on the call, so it’s a nice group of folks who really … different aspects of either having a loved one passing or worrying about their own death, and we try to just talk about it and give some practical information. Then in September, our book chat will be with Bonnie Friedman who wrote the book Hospital Warrior. I feel very honored. I was at her original book launch several years at Iona Senior Services. I helped her get that book off the ground, and she also has added to that book and feels like it’s time to come back and talk about it again.
Patricia: It’s a really great resource for anybody going into a hospital situation who may not be familiar with hospitals and how they work. You really have to be your own advocate or you have to advocate for someone else in this case, but it’s a really nice little handbook.
Loretta: I might come to the Death Cafe.
Patricia: Oh good. The other thing I wanted to tell you about is that we’re giving away free games called Making Memories Together. They were designed by a gerontologist, Dr. Gene Cohen, who did all research in arts and healing. If you would like one of these games, they’re old-fashioned board games. Let me show you the backside, and basically, they’re conversation starters. Whether you’re working with a family of multi-generation who have cognitive challenges or not, they’re based on your own photographs, and so you make the game, and then you get to play it, and making the game is as much fun as playing it. If anybody on the call would like a game, I can either drop off on your front porch, if you’re local or I can pop one in the mail if you’re not.
If you’re part of a community, where a village, where you think you might like a dozen games or 40 games, I can do that too. I’ve got about 1500 left.
Loretta: Oh my God. That’s amazing.
Patricia: Yeah. It’s great, Loretta. If your group homes, that you’re familiar with, like the amazing Ms. Mae or anybody would like these, maybe we can meet somewhere and I can pass them on to you.
Loretta: Okay. Cool. I will ask Ms. Adrian, the activities director. Yeah, she’s quite the thing, and she didn’t see them for a while either, so she made mass for the first couple of months until she quarantined, and then she started going between the five houses and that’s about it. They just had groceries in, so nobody’s really been in and out, which is…
Patricia: For those of you who would like to connect up with Loretta, her phone number’s in the chat.
Loretta: Yeah, and my website and stuff, she had on there. The book she was holding was the 2013 version, so this is the new cover. Same title and this is the newer edition, but that was a picture of … this was one of the PBS special, the new cover, but that’s the new book. I do want to thank y’all because y’all actually lifted my spirits today. When we got on, Patricia said, oh, I was like, oh, it’d be quite the day. But I’m wearing this little, you can’t really see it, but Sparkle t-shirt, but one of my best friends died this morning, and I was like, I got to get myself together. She had cancer, third go-round with cancer.
We met at an Alzheimer’s conference five years ago, and she just announced in front of 300 people that I was speaking to that she was going to be my best friend. When my husband died, she sent me a motivational saying every day for 60 days, and we have been fast friends. She was an activity director for the special Generations Crossing in Harrisonburg, Virginia, and I go there three times a year to do LEGO art with their dementia patients. If you have any LEGO questions, I’m your girl for that. We just became fast friends and her… and they are just devastated.
Patricia: I’m so sorry.
Loretta: It’s an intergenerational program funded by The Commonwealth of Virginia because they have little kids and adults, so they’re trying to explain to all the little kids today that Ms. [Manetta 01:01:24] isn’t coming back. Oh, quite a day. So, it’s been quite the day of tears and all that, so I was glad I had this to focus on, but …
Patricia: Virtual hugs to you.
Loretta: Oh my God, what a thing. I woke up this morning. I didn’t look at my phone until later. Yeah, so she died about one o’clock this morning, but what a force, and everybody said she just kind of sparkle. I think the hope is she gave [inaudible]. I think the greatest loss is going to be, she inspired all these families of kids with special needs or folks with Parkinson’s and to have hope every single day. That is really going to be missed. I’m not sure how you replace somebody like her at a lot of these facilities, so what a loss for [inaudible 01:02:06] Harrisonburg, and even some college students who work with her in internships and things. This is the first person that they’ve known who died when you’re a college student.
But that was it. One thing, Patricia, I would say about the games, if you can’t hook up with her or anything, now that school has started again, a lot of these high schools have this geriatric kind of … programs where kids can develop an app or different games and things that … two high school kids to go to my mom’s group home, and they have been making all kinds of games for them. Reach out to some of your grandkids or your neighbor’s kids, somebody’s kids, and they will always get into creating things that will inspire your loved one, no matter where they live. Mary, one of the most interesting things about that sometimes is that they tell you they’re not interested in something, but then if some kid comes over, they’ll play with them.
Patricia: So True. so True.
Loretta: It’s so true.
Patricia: I have to tell you that, in October, we’re going to have Morgan Russo, who wrote this brand new book called The mediators.
Loretta: The Mediators. Yes.
Patricia: It’s actually a story about how to make sure you’re not using too much screen time, which is now we’re always on, and how to use it so that it most benefits. But the story is about a little girl who’s writing an app for her grandfather.
Loretta: I tell you what, and it is really … I have been decreasing my screen. You can get a report about how much screen time you’re using, and I have really cut down over the last two weeks. I think the news was just really starting to get to me. I’ve been doing a lot of one-on-one as opposed to without my social media thing. I think that really helps us too. My mom can still read, she cannot comprehend, but she can still read, which is shocking actually for 91, and at this stage where she is. There are several people in the house much younger than her who can no longer read. I don’t know why she can read, but … so we read to each other during the backyard visits, and so yeah, it’s kind of cool.
Patricia: That is so sweet. Loretta, thank you.
If you would like to schedule an appointment to discuss your Alzheimer’s and Dementia care needs or to set up a free in-home evaluation with one of our nurses, call us today in MD at (301) 363-2580, or in VA at (703) 556-8983. We are located in Bethesda, MD, (301) 363-2580, and Reston, VA, (703) 556-8983.