Virginia and Steve are joined once again by Lisa Up de Graff, one of their first guests, who gives an update on her mother’s Alzheimer's disease journey. Lisa describes new challenges she has faced as the disease has progressed and recounts how she has dealt with transitioning her mother into hospice care.
Virginia and Steve are joined once again by Lisa Up de Graff, one of their first guests, who gives an update on her mother’s Alzheimer's disease journey. Lisa describes new challenges she has faced as the disease has progressed and recounts how she has dealt with transitioning her mother into hospice care.
episode-33-lisa-up-de-graff
Intro 00:06
From the University of California, Irvine, this is UCI minds, spotlight on care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.
Virginia 00:22
Hello, and welcome. I'm Virginia naeve, and this is spotlight on care. I'm here with my co host, Mr. Steve O'Leary. Our guest today is Lisa Up de graff. Two years ago, she was one of our very first podcast guests. And she's still caring for her mom, who now has had Alzheimer's disease for about seven years. We thought it would be interesting to find out how things have been going for her and her mom. And she will let us know what the disease process has been like for the last two years. Welcome, Lisa. We're so glad you're here with us today. And thanks for taking the time to be here.
Lisa: 01:06
I'm so glad to be back. And so much has happened and shifted in the past month or so that's actually a perfect time for me to rejoin you and kind of update you on my journey. Because it's, I think that Virginia had you told me all the things that I'm going through now, back then I know that I wouldn't have believed you, but I wasn't ready to hear it. Yep. So there is a continuum to caretaking. And I've reached a new plateau with my mom. So it's actually was just serendipitous that you asked me to rejoin you,
Virginia 01:45
I'm so glad that you did and and Steve and I are often asked about, you know, the very end kind of stages and why it's hard to know what we should answer and what we shouldn't because it's it can be overwhelming at times, and I totally understand what you're going through.
Steve 02:05
It's interesting how you're, how you get prepared. I think the Lord doesn't necessarily give you too much too soon. And it prepares you as you go through this journey. That's an interesting comment you made.
Lisa 02:20
Yeah, amen. I absolutely agree with you, I think that it's sort of an ad on an as need to know basis and your your brain just can't comprehend. More than that. And if you were told, and this is graphic, but if you had told me two years ago that I was gonna be changing my mother's poopoo diaper every single day, I probably would have said yea yea Right. But that's the reality of it. And and you just sort of grow into your role. I mean, the thing what you need to do what you need to do, and even that itself, changing the Poopoo diapers has become such an ordeal and such a journey into itself. That that, again, you can't prepare for it really you can you can adjust as as you need to,
Virginia 03:12
you somehow get the strength. I often say that if humans didn't have to eliminate life would be a lot easier for someone with dementia. You told us two years ago that you were doing your best to keep your mom at home because that was her wish. How's that going? And have you changed or added caregivers
Lisa 03:37
we have we have been able to keep her at home. This has been her request. Luckily she's in a which I think I mentioned to you there's a one bedroom ranch style home that I baby proofed and added things as I had to including a shower, shower transfer bench which I'll talk about later but so I have been able to keep her at home and we have two wonderful live in housekeepers who God bless them same women and they have been taking care of mom and now I mean their duties aren't really housekeeping or running errands. It's it's just keeping mom fed and and changing her diaper or I've been helping to change her diaper now I really have to because mom isn't weight bearing anymore. But I have been able to do it and I found that it's been a lot less expensive than putting her in a facility I have a lot of friends who have put their parents in facilities for one reason or the other and either you you don't have the the resources or the or the to have somebody in the home all the time. Or you live in a different state. I just happened or my best friend who's much she lived in Bangkok and her mother was here in Los Angeles. But, but I've been able to keep mom at home because it worked And it was a lot less expensive and so that because it can bankrupt families and it's tragic. It's a whole other episode I'm sure but so yes, so I have been able to and I have made modifications as we've gone along, I did buy a hospital bed, took got rid of her regular bed because she really couldn't get in and out of it. The right the first hospital bed i i bought for her in or had for her in through Medicare didn't have full guard rails, I would suggest highly anybody who's going through this, get full guard rails because my mother, of course, doesn't know she can't walk and she fell out of her bed in November trying to get out of it wasn't, I think was just a hairline fracture. It wasn't a shattering of everything, which is amazing to me, considering she has bone on bone osteoarthritis, but it kind of put her back a spill. And so we just kept the bed, I was able to get her standing long enough in her walker to put her in the wheelchair to wheel her and to give her a shower. And alongside with I used to have a shower bench, then I bought a transfer bench.
Virginia 06:11
What is that?
Lisa 06:13
It's actually a really groovy thing that my mother can no longer use because she can't get out of her wheelchair. But it's a shower bench that goes half outside of the shower and half inside the shower and has little levers. So you got them to sit on the bench itself, then you have to kind of pick up their feet and you press up the levers and you slide them into on the seat which moves on the bench into the shower. So they're they're able to they don't have to clamber into a shower, like before I used to build to get my mom to hold onto the rail and then put one foot over the other was very
Virginia 06:51
I know we went through that. Steve, do you do you remember a transfer shower?
Steve 06:56
No. But I think that that's just you know, this is the number one issue of people who are aging is showering and how you get in and out of the shower and how somebody can help you and especially, you're dealing with your mom imagine dealing with a 200 pound man, like no. Without something like that. So yeah, that that's great innovation sounds like
Virginia 07:22
she's doing that. She's not afraid of water. And
Lisa 07:27
that shifted. And I think we talked about it. And also I talked about a good friend of mine whose father has Alzheimer's. She had asked me a couple of months ago. Does your mom still like showers and my mom loves her showers. It's difficult to get her in the shower. But once she's in, she luxuriate. She loves one of the few pleasures she has. So I would just, you know, indulge her in her shower. And the past month, she's decided she hate showers. And she's more I don't know if she's afraid and it's become horrific. It's become horrific. And I've happened. My mom is now in hospice. And that's another topic, but we've gone from my mom loving showers to refusing and hitting and kicking and spitting and biting and punching. We've tried to force her in twice now and it was so horrible for everybody. And I finally decided that she could we can get her we couldn't even get her on the transfer bench. So instead, we I decided to back her in with a wheelchair, you know, you back them into things in the wheelchair and I bought long time ago. I don't know if it's a transport wheelchair, but it's like a it's a light and sporty wheelchair so it's not heavy. And I think it's titanium. Not really sure, but it's light. So I can I could push her over the lip of the shower and shower her that way. But it was horrific. So I just actually was on the phone this morning with hospice with the caretaker and the care caseworker. And I said, You know what? I think if it's going to continue this way, it's so bad for everybody that we should just sponge bather her from now on and if her hairs dirty. Oh, well,
Virginia 09:10
they have these crazy. They're like plastic dishes with a blow up pillow for the neck and you can actually in bed wash somebody's hair.
Lisa 09:22
Really? Okay, that's very cool. I'm writing this down.
Virginia 09:26
Yeah. Um,
Lisa 09:28
where would I Amazon? Where would I find something like,
Virginia 09:32
You know what, Amazon, you can find just about anything, because I was having the same kind of trouble with my mom. And I kind of forget how that went if we if we actually had success with that, but look it up and it might be worth trying.
Lisa 09:46
Sure. No, thank you so much for that. That's a huge tip. Yeah, this is why we all help each other because like things like transportation or I never heard that before. It's like you talk to people and then you learn different things and you just So like throwing stuff at the wall and seeing what sticks,
Virginia 10:03
and then you solve one problem, and then you've got another problem like right after it.
Lisa 10:07
Exactly, exactly.
Virginia 10:10
Okay, how much is she talking to you? Because two years ago, five years into the disease, she was very aware of her situation and she didn't want to hear the word Alzheimer's. And she did not want to discuss assisted living communities. Is that still the same? And how's that?
Lisa 10:28
It's exactly the same. My mother still believes she can walk, she still believes that we don't talk about Alzheimer's. We don't talk about hospice at this point. We don't talk I still fib. And tell her the medicines she's taking is they're all natural supplements, because that's what my mother had. It was how I was raised and she doesn't believe in any Western medicine. I've had to because she's become again the past two months since we've had her on hospice would become extremely aggressive again, and angry and having a tantrum for like hours on end. We've, I think it's called Haldol. I'm not really sure I'm so sorry. But it's an anti Sero but we had her on Seroquel. And she's on the maximum dosage of Seroquel. To keep her calm. We've added another another component. And now it's every six hours because she's so angry and so mean. And so she refuses to do anything that we asked her to do. And that could be anything. So
Virginia 11:35
I didn't know if she was speaking. At this point.
Lisa 11:40
She'll spin off into nonsensical riffs that don't follow. It's not a you know, it doesn't fall as non sequiturs. You know, and what I have found, and this is because I, I have been taking care of her for seven years now, there's a difference between what's happening now, which I think is a natural progression of Alzheimer's, and she still talks, but it's not gibberish, it's just going off into some random tangent. So she can't keep focused on anything. That and when she presents with a UTI is a totally different thing. That UTI is delusional craziness, that and I had to fight when I first got her on hospice to get her on antibiotics, because I knew she was presenting with a UTI. And that's where the speech was just I mean, it was just nonsensical. So yes, she still talks, she still recognizes who I am. Although she'll call me her mother, which I am right now. But she still is talking. And I know there is a point where they become nonverbal.
Virginia 12:51
I knew she was not an easygoing person. But it doesn't sound to me. Like that's gotten a whole lot better.
Lisa 12:59
No, it's actually become accentuated. And I know, friends whose parents are we're very easy going and kind of like yours, Virginia. And then the Alzheimer's to kind of takes over and they become mean, or they, they just say completely inappropriate things. And that isn't my mom, my mom has continued to be as irascible as ever. So it hasn't. It's not been an easy journey. And I bet the past five or six months, because I've seen the decline, I've been able to come and meet her with much more compassion that I would have maybe even two years ago when she was really irritating me.
Steve 13:43
Could you talk a little bit about your decision to bring on hospice care? And was that something recommended by the doctor, something you decided on? And what was the process about selecting a hospice nurse or company?
Lisa 13:57
I actually had been approached it by her primary care physician in November when mom did fall. And she said, you know, Lisa, we have to start thinking about perhaps, and even before that, I think hospice and I think in my mind, to me, it meant end of life right this second. So not, and there was just something about the verbiage and the meaning in my head. Even though I have friends who've gone through hospice. My father had gone through hospice at the very end of his life, and I wasn't ready for it. And I said, and she said suggested palliative care which we started when we started with palliative care. And it just wasn't enough and then mom fell again. And we decided, I had a long very frank talk with her physician who said, I don't want to influence you. It's got to be what's best for the family. But what will be her quality of life if she you know, perhaps has a hip surgery, hip replacement surgery and then she's in a facility and then move her into facility full time. It's not what she wants. And I said, You're right. It's not what she wants, she wants to die in that home. And she has been very clear about that all along. And she still refused surgery and she hadn't, whatever she did when she fell, it wasn't so egregious that she had to go in and have surgery. So the doctor suggested, maybe now it's a time for hospice, she'll be at home, you'll have care, you'll have more help, you'll have more resources. And I was ready to hear it. And so I remember I met with the intake nurse and I, I my mother was for the entirety of the two and a half hours he was there was screaming at the top of her lungs tantruming over something and you know, it's like with a child you don't remember anymore, because whatever it all blends together into this big blur of she's angry about something. And so that's when, and I remember feeling like I was doing the right thing. And I knew I was going to get more help for her, especially with bathing because she was getting more and more difficult to bathe. And I know I went to Ralph's afterwards, and I just saw it all the way through the aisles. If it wasn't end of life, this second it was end of the life pretty darn soon in terms of life. So it was really the the her internist who's step mother had developed early onset Alzheimer's, so she knew about Alzheimer's, and she was the one who actually first thought Mom had Alzheimer's and wanted her to be diagnosed. So that was the the process to to get her into hospice. And it has been and I just followed an answer to your question. The reason I chose that particular hospice that we have now was, I didn't do any research at all, it was just what was suggested and prescribed. And so I would suggest, because I've had a bad experience so far, which is being remedied to do your research. And when you when a time comes to get to put your loved one on hospice, and get referrals from friends, take whoever your doctor recommends, ask them why they recommend that particular hospice. There are so many out there, it's a big business. And it's taken me two and a half months now to finally get everybody on board. Feel comfortable with it. I think I raised enough ruckus, because I felt like my I wasn't being heard at all about a lot of things that now I think things are starting to iron out. But that's something I didn't know going into hospice, you can shop around, you can choose somebody else. I would do that. If I were you,
Virginia 17:42
Steve, I think you interviewed three.
Steve 17:45
Yeah, I was just going to add to your your story by saying one, hospice can last a lot longer when you think about it as the last few weeks. And really, for an Alzheimer's patient, it can be months. And so and they can be re upped if they qualify. So there are certain criteria. In fact, we have a fabulous podcast on hospice that I think cover some of what you talked about. The other thing is, is you can change, you're not happy, it's like finding a doctor, you know, if you're not happy, get another doctor. And the other thing is finding look for somebody who's an experienced organization and nurse with Alzheimer's or dementia care, which is an entirely different care than somebody who's just going through hospice, a cancer patient or something.
Lisa 18:36
Amen to all of that. I agree with you completely. And again, it was not anything i i just didn't know.
Virginia 18:42
I didn't know either. I just took the person that our facility recommended. And I had, I had no idea that I even had a choice. But we it was only like two weeks before my mom passed. So I didn't have time to even think about anything. And I was all confused. Anyway, I was upside down completely.
Lisa 19:00
I can only imagine and that was how it was when my father went in to he was diagnosed basically with lung cancer and put on hospice, but when they're gonna it's one of they're gonna be there for kind of a longer stretch of time. Yes, you have choice and yes, if you don't like or you're not, you're not gelling with the the hospice organization that you get, you've chosen you can switch. It's a good thing for people to know, because I thought I was pretty pretty well versed and I had no no clue at all.
Virginia 19:34
You mentioned this morning in our communications that you had a conversation with, was it the social worker, how'd that go?
Lisa 19:42
It was really actually really nice. And he gave me his phone number one of the things with the health card with the the hospice that we're with, is it such a large organization that my mom has a certain team and when the nurses call you or Call you back. If you can't pick up the phone, and it all comes from an unknown caller, so there's it's a blocked caller. So if you're anything like me, I don't tend to pick those calls up because I don't know who they are selling solar panels or something. So I got a lot of missed calls. And then I'm fi call back and had to go through a gatekeeper secretary, and then they had to get the message and then the SEC, then the nurse would call me back and then I wouldn't pick up the phone. It was just ridiculous. I think I lost my temper. And I said, I'm going to switch I really I am going to go to another company because this is ridiculous. And I am not getting my my questions answered, mom is now not weight bearing I've asked for a something called a gait belt for to help me get her up for three weeks, and I have not had any communication back. Mom needs somebody to cut her toenails. Nobody has called me back. And I said, this is I know this is a business and I'm going to call somebody else. And all of a sudden, everybody started calling me and the case manager call me and the social worker called me and everyone was very, very nice. And I obviously this is their business and they don't want to lose the money. So we'll see, we'll see. But the case the social worker was lovely. He gave me his personal phone number. He said, If there's any problems, please contact me. He's going to have they have a sort of a spiritual chaplain who comes out and talks to the patient. And I said, as long as they don't mention, death, dying, Alzheimer's, or hospice timers are fine. Come talk about the Elks. Bob goo lay, I mean
Virginia 22:00
certain things she's not she does not want to hear.
Lisa 22:03
So I think that sometimes the squeaky wheel gets the grease, right, whatever that saying is. It's true, though. Yes. So I think that I think everybody realizes that it was just too big of organization, it needed to be winnowed down to a manageable team, where there could be communication, and especially when it comes to things like UTIs. And again, like when my mom's poopoo diapers, I needed that gait belt, which is something that you put around your their waist, and it helps you kind of like, lift them up, because now it's going to it takes two people to change her diaper. And I mean, there was just it was impossible.
Virginia 22:42
People need to know that if they're not happy, and they're not getting service that they can change or have a serious conversation like you did like this needs to change.
Steve 22:51
Well, I think the point you were making is that care can come a lot sooner than you would think about it, we traditionally think about hospice is the very end. And this is great, because most of these organizations do have teams. And now there's, you know, different people for different functions. And as long as you've got a good nurse or cares case manager that you're working with and monitors what's going on. It's a great service. And you know, it's been paid for so why not?
Lisa 23:22
I mentioned that I was having a masseuse, come over to massage mom, because her she was developing so much edema in her legs, because to sit on this couch all the time. And the case manager said, oh, you know we have, we can have somebody come out a masseuse come out. So that we should this wonderful woman, she comes out once a week. And even if she's just gently touching mom, she's listening to her and mom's having contact.
Steve 23:50
When the hospice person came in, they didn't detail the services that were available to. There's another thing to learn, which is they should go through what their services are. And this is one of the ways for you to compare services is what different capabilities do you have that I can access? Anyway? Sounds like you're in a better place than you were at the beginning, which is the important thing.
Lisa 24:13
Absolutely. And if if, if my journey can help anybody else, I that not have to make the mistakes that I did, or at least know the questions to ask because I kind of like didn't know.
Virginia 24:28
So what fills her day?
Lisa 24:31
Its really very sad. I mean, I remember one of before she went on hospice, her case manager from the UCLA Alzheimer's division, who was a lovely nurse told me to buy mom like connectivity blanket that little kids would use that you zip in you up and down and you tie things and mom looked at it like are you kidding me? My mother went to Stanford, my mom is really smart. She's so what the heck is this thing? So she She watches a little TV. But she won't watch until she has rules. Like somehow she knows five o'clock. That's when TV could go on. She really, she can't reach can't really see anymore. She sleeps a lot. And I think I mentioned my mom had this cabaret Act, which is one of the reasons why I think she's staved off alternatives. As long as she did, she had all these songs memorized and patterns and stuff. But thank God, she did all these CDs, these little CDs that she'd sell at her shows. And I put that CD on over and over and over again. And she just listens to herself and she sings and that's what brings her joy
Virginia 25:41
She still sings,
Lisa 25:43
she sings, but she remembers a lot of the words, which is kind of which is again, very interesting. These are all, you know, old standards that we would know. Not the young guys. Those of us, right, have a certain age. Yes. So she remembers a lot of the words and she and she sings and that's really, but is there quality of life? I mean, that's, I don't know.
Virginia 26:15
Okay, we're gonna wrap up with this question. How are you doing?
Lisa 26:19
I am doing okay, I am so grateful that I have friends like you, Virginia that I can talk to. And that when I reach a new place, I can you give me support. And that means a lot to me, I think reaching out to your friends, I have a lot of friends. Unfortunately, I'm at that age. A lot of our parents are going through this, a lot of our mothers are going through this. And so we all support each other. And again, I'm so blessed. I live very close to my mother, but I can walk away. So I'm close enough that in four minutes, if something happens, I'm at home, but or at her home, but I make sure that I do an online exercise class. Every day I do meditation, I do everything I can to keep myself centered and grounded. Because I know that when I'm not, and I'm frazzled, and I go over, I'm not as nice. And I'm short tempered, not short. I mean, it sound like I'm terrible, but I I'm just not as compassionate and loving and patient. And if I take care of myself, then I am. And so that's a big lesson, you have to take care of yourself no matter what. And I think it's much more difficult if you're living with your loved one. But you have to make time for yourself either through the meditation or the exercise or go walk around the block or whatever it is. That's so key, because that reflects dramatically and directly in your caretaking. We try to
Virginia 27:43
stress that point all the time. caregivers have to put their mask on first. Steve, do you have any questions for Lisa?
Steve 27:53
Yeah. So this is a tough one. Are you starting to worry about and think about the end?
Lisa 28:01
I think about it quite a bit. And I think that's why we'd be a lot in Ralph's. And I'm trying to I'm even though our relationship is has shifted so dramatically over the past seven years, and I really am her mother now. I'm trying to remember what a dynamic person she was. How what a go getter. She was how smart she was, how much she did community service, how she was such a wonderful grandmother to my children who absolutely adore her. And I'm trying to remember all the essence of my mom, that she's leaving behind because the shell of her body now that she's leaving behind isn't really my mom, it's it's the vehicle that's shutting down. And I think whatever the spirit is what she's already kind of transitioning, she talks about it all the time. So I know it's going to be super hard. Because it's been part of my life. The past seven years has been my identity has been her caretaker. But my prayer every single day is that is that she goes before she before she's completely bedridden in a vegetative state. But that's up to her and God, but that's my prayer. So that's what I that's when I come with compassion to her.
Steve 29:20
Sounds to me like you're doing really well. Well, part of the process, you know, there's
Virginia 29:27
nothing harder.
Steve 29:29
Well, the reason I asked you the question, I thought your answer was excellent is, uh, you need to be aware. You need to accept the fact that it's going to happen, and you need to start the grieving process because it makes it easier on you and it makes the caregiving more worthwhile and yet you're sitting there kind of wishing for other activities to happen. So very normal. It sounds like you're in good shape girl, so good for you.
Lisa 29:59
Thank you Well We'll just see how Easter works out.
Steve 30:02
You know, we talk about this journey, and it's a journey that we all go through, but it's a different journey. And you know, I say to some people, occasionally, that you can come out of this journey feeling actually, that you went through something that was a positive, sad, difficult all of those words, but in the end, something that you actually benefited from as a person. So sounds like you're there.
Lisa 30:32
Thank you for those words. I agree with you completely.
Virginia 30:35
We learned so much going through that journey. I don't think any of us would choose it. Hmm. All right. We'll wrap up. Thanks, Lisa, for joining us today. And I know this information is going to be helpful to a lot of people and it will help them know what might be ahead of them when they're experiencing caregiving for a loved one. And for our listeners, we hope you join us again soon for another episode regarding Alzheimer's and other dementia caregiving on spotlight on care.
Outro: 31:07
Spotlight on care is produced by the University of California Irvine Institute on memory impairments and neurological disorders. UCI mind interviews focus on personal caregiving journeys and may not represent the views of UCI mind. individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information, visit mind.uci.edu