Virginia is joined by Irene Olson, author of the book, “Requiem for the Status Quo'' and a state long-term care Ombudsman. Irene shares tips and challenges she faced with being a long distance caregiver for her father. She emphasizes the importance of building a strong relationship with the staff at the care facility, which in her case, allowed her to remain involved in her father’s care, even at a distance.
Irene Olson is a member of AlzAuthors, a 501(c)(3) charitable organization that serves as a carefully curated resource for caregivers and family members of those living with dementia. Find them at: www.alzauthors.com
To purchase her book, "Requiem for the Status Quo", visit: https://amzn.to/3rnPK8F
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.
Welcome to spotlight on care. I'm Virginia knave and my co host, Mr. Steve O. Leary is unable to be with us today. But he'll catch up with us next episode. Today we have a guest with us who was a long distance caregiver for her father. I think it's safe to say that many of us don't live with right next door or even close to our loved one who may be experiencing dementia. Our guest is Irene Olson. Her career path ironically, led her to work for assisted living and memory care residences. She was a state Long Term Care Ombudsman, and an Alzheimer's support group facilitator. She wrote a wonderful book called "Requiem for the status quo" in honor of her father who experienced Alzheimer's disease, and passed away from it in 2007. She cared for him from the beginning of his disease until he passed away. Even though she lived in Seattle, and he lived in Oregon. I must clarify something here and tell our listeners that Irenes father had already moved to an independent living situation that also had assisted living and memory care if needed, as his wife suffered from Parkinson's disease. Because of that, moving her father to a care residence was not an issue for her. Although long distance caregivers have different or additional challenges if the loved one stays at home with an at home caregiver. So with that said, Welcome, Irene. We're glad you're here with us today.
I am really happy to be here. I'm so glad that I was invited. Thank you.
You bet. I really enjoyed your book. You know, I think it was the first one that I read that was written as a novel. And not just to how to book was was so creative that way.
Well, I decided I didn't feel like I was an expert. And I didn't have any initials after my name, like MD Ph.D. E. IO. So I decided I would just write a novel and just be a novice. And there you have it,
you did a wonderful job.
Unfortunately, when your father started to develop dementia, and because he didn't, because you didn't live near your father, you obviously had to do a lot of communicating with him by phone. You also tried to fly in once or twice a month for visits. Is that right?
That's correct. At the time, there was this wonderful thing called where you could buy airline tickets by bulk. So it was cheaper. And you can make all the changes you wanted and everything was good. So I did do that. I was working full time at the time and but relied mostly on phones, phone calls, email, etc. He he owned a personal computer before the rest of us kids did so. So that was that was very helpful, especially being in the Seattle area and him being in Southern Oregon.
So you used to email back and forth.
Oh, yes. Well, even before that we used to fax. I know people don't know what that is that we used to. We used to fax letters to each other. And he bought a fax machine for all of us kids, all three of us. And so yeah, it was always easy to communicate electronically until it wasn't
until it wasn't. Yeah, exactly. You had two siblings who also did not live near him. But you it was kind of an agreement that you all made that you would be the lead. Yeah, his care as the dementia started and as it got worse is how did you decide to do that?
I had made a career shift from the legal field to long term care field. And I worked in long term care. And so I had been exposed and trained even though I wasn't a medical person in long term care. I was trained and I was like the universal employee. And so I could do things I knew what to look for. I knew what to expect and they trusted that my brother and sister and they just said thank you very much for doing this. Have, they trusted me. And that's helpful, because it's not always easy for siblings to cooperate. And I was blessed in that matter.
I think I was blessed in the same way, actually. But I know a lot of people who weren't and they have a lot of difficulties with their siblings. There's a lot of decisions to be made. And it's not easy. So how once his dementia got rolling here, how did you establish good relationships with the staff at assisted living and memory care, and how important is that
it's so important Virginia, and whether you live hundreds of miles away or two blocks, having that presence and relationship with staff people, I call it just being visible whether you're there or not, because a family member contributes to the care plan just by knowing that person, their father, mother, whomever. And of course, the professional caregiver contributes to my understanding and knowledge of what my father's situation was. But I when I say this, I don't think that you want to take on the squeaky wheel, squeaky wheel role because the squeaky wheel, let me tell you working in long term care, especially as a caregiver or a nurse, etc, is a very, extremely difficult job. So you don't want to be the squeaky wheel that needs their attention. But you just want to be present, whether it's phone calls, or when you visit, setting up an appointment, don't expect them to drop everything, setting up an appointment, to talk to someone to go over dad's mom's care, etc. And what I've found also is that it may not always be the medical person that you develop a relationship with, although that's very important. It might be the dining person, the dining service person, the receptionist, you know, the office manager, that was my role at long in long term care. So it's just developing a relationship so that there's open lines of communication and so that if something rough happens, which it will, you're up to speed,
you know, I'm sure they appreciated that so much. I knew a few bossy people that would go in, like every day and point out everything that she didn't like was happening to her husband and his care. Yeah. And I think they kind of were rolling their eyes whenever she walked in. They were good with her. But I remember thinking, Oh, here we go.
And that was probably that person that you're talking about was probably that's their way of contributing. Yeah, you know, and it doesn't always work. Sometimes it does. But it's such a an individual situation. So it's like you, you do what you can. And I always feel that if when you're doing your best, you're doing your best. And that's all that's needed.
In a stressful situation, too. yeah, I liked your tip about having a special ring on your phone where you knew they were calling.
Yeah, this was when I relied on landlines more but Oh, but at our home, but yeah, when that when that rang, whether I was eating dinner or doing the dishes, or whatever the case may be, I thought, oh, here we go again. But that's okay. Because I knew what I girded my loins so to speak, and I was ready for the call. I didn't know what it was going to be about. Maybe it's just going to be a wonderful, pleasant conversation. And dad didn't decline. It was helpful. And I already had relationship with them. So usually, the person who called me was someone that I had spoken with before.
Yes, yes. And you didn't you say you made it a point to have a monthly meeting either in person or on the phone with the real managing care?
Yes, I did with with the the managing care person. And I and I was very well, I was somewhat flexible about being able to go and visit in Southern Oregon from the Seattle area. But I didn't want to overtax the time, but I just said hey, for example, Selena, what would be a good day next month Or next week? Or tomorrow? That would, that would be handy to you and we could just, you know, get caught up on each other on dad status. Yeah. And it worked out it worked out and she did appreciate it. But I had to respect her time because again, Her time was not her own.
That is so true. There's they're busy, they're understaffed a lot of times and I'm sure they appreciated that so much. Now, I'm sure Occasionally he would need a doctor appointment. And looking back, I remember taking my mom to a dentist. And finally I found a dentist who would come to assisted living, to help out, which was really amazing. But how did you handle his needed doctor appointments?
Well, some of them, especially if they were last minute care staff would take them in whatever vehicle they had for those purposes. And then they would report back to me what the visit was about because I had a relationship. And because my dad's wishes were expressed early on that they could tell me anything and everything about dad, and I'm authorized. And that's a real important, that's a real important point, if you want to want to know what the what is, is to be an authorized person so that they speak openly with you with me. And you can get what the latest and greatest and not so greatest is. So they would follow up with me. And then sometimes though, I would make a point that, okay, if you could schedule dads, eye visit, for example, this week, or next week, whatever, then I would make sure I was there. And and it was a very eye opening experience. Here I'm talking about an eye appointment, it was a very eye opening experience, no pun intended. But it was for me to be there and see that dad could not follow anything that they asked him to do. I was like, okay, that's where we are. So whether, again, you you live two miles from mom, or dad or your brother or your sister or whomever, or your 1000s or hundreds of miles away. That's a real important thing to be able to be witness to. Because it helps you as the loved ones. Know, their status. My goodness, Dad can even find the green light that they just told him to look at. Yes, and I know where it is, because I wear glasses, and I've had those exams, but it so I would just go down there and I would have that exam with him or go into the exam with him. And it was also kind of heartwarming, because just watching dad respond to the medical person. And but at the same time, for example, get frustrated, because he couldn't follow her directions, for example, for this eye appointment. And I'm telling you
about that they know they know if someone says read the third line, they sit there looking at that going, what do you third line? Or what what are you talking about?
Yeah, so they don't I think hopefully now people are more conversant with dementia, the disease to know how to redirect there and improve on their instructions for their patient. But I mean, it was just very frustrating for him. And I'm telling you when my that particular day when we walked out of the exam room by the front desk, the front desk person said, Shall we schedule next year's visit? And my father and I, because we're so alike we both said in unison? No. It was more like hell no, but But I mean, you know, it was like, no, because it was just too much dad can see, he sees as much as he needs to. He doesn't have a disease per se. He's just an older person wearing glasses. We don't need to revisit this again. And it save all of us the struggle
Theyre kind of stressed out, So nobody likes those kinds of exams.
No, no, no. Yep. You're very right.
So following up with instructions from doctors, did you ask for written reports? Or was this just, you know, ongoing verbal exchanges,
it would usually be an electronic report, I get an email because I mean, if anybody doesn't have time, it's the doctors, any medical staff. So just them sending me here's a summary of your father's appointment. This was before the portal, medical offices portals ever existed, which is a wonderful thing now. So I didn't, there was nothing like that. And so I would just say, please send me a summary of his visit. And so I know, and I kept that in my records here, which some of it became the resource for my novel, because I would look back at it and go, Oh, yes, this is the kind of stress and struggle that happened at that time. Let's see if I can incorporate that for the benefit of others who are going to read the book.
Yes. And it was so helpful. So many times you would put in just a little helpful hint on how to do something and weave that into your story. As time passed, of course, communication with him got more difficult. He couldn't dial the phone,
he couldn't dial it, he couldn't answer it. There's no way he could handle the computer anymore. Fax machines, those that we retired those when the computer really got going. So, yeah, it became very difficult. And again, because I kind of had, I had established a relationship with some of the various staff members, I was able to call the main desk and say, If my dad is available, could someone break, please bring this phone to him or whatever the case may be. And so I could have a real quick phone chat with him just so he could hear my voice. Because let me tell you, and I know everybody who's experienced this knows that your your loved one with dementia gets further and further away, step by step, whether that's not being able to pick up the phone, send an email, send a text, whatever the case may be, you're losing that person, inch by inch, is having some sort of contact, if at all possible, is a very important thing.
That leads me to my question to you, when you mentioned to him that you were going to visit next week, whatever it is, you would say, it created an anxiety for him. I remember that with my mom.
Yes, it did. It created a very intense anxiety for him and for the staff members. Because dad, when I said I'll be there, march 15, it's a Wednesday Dad. What he would do is every time he'd see a caregiver or even a dining server, whatever, when is my daughter gonna get here? When is she gonna get here? Is it today? Is it tomorrow? Did I miss her visit? Did you not tell me she was here. And even though you know, I flew there, he doesn't even remember that I had to fly there. You know, I just arrived, I knew he'd be there. He was a captive audience. So I just shoot usually showed up in the dining room or knocked on his door when he had a separate a little apartment, and just say, Hi, Dad. I thought I'd come by and visit. Oh, Irene, I didn't know you were coming. What a surprise.
And it wasn't, why didn't you tell me you were coming, I would have put it on my calendar that's beyond them.
And so again, whether you live nearby or far away, telling your dad as you're leaving, or your mom or your loved one, as you're leaving, I'll see you in two days. That is probably creating some anxiety. So just show up when you can just show up, it might be after dinner before dinner, before his nap during his nap. Just just show up because who doesn't like a nice surprise. That's a nice surprise. And then he's happy. So
I know all these things that people don't think about until they're experiencing it at the end of your father's journey with Alzheimer's. What What was that like? And how did you handle a lot of the end stage?
Well, with my father, he was unfortunate to have a combination he has he has Alzheimer's disease that is doing what it does to the brain and it also does things to the body, but he also had prostate cancer. And it was untreatable because of the Alzheimer's because he would have never survived the everything. He was 89 when he died. And when I received the call, that if the family wants to be here before your father dies, you should probably get here. When I flew down there, he had taken such a decline because the cancer and the pain from that was doing a number on him. And of course when you are compromised by dementia, when you get that wonderful pain medication, it's also going to compromise your cognitive abilities. But you know he was not in pain. My brother and sister came down to see him as well just before he died, but after when I got home a week later felt guilty. And there's a lot of times all of you caregivers, you're gonna feel guilty about anything and everything. really. You're going to be feel guilty about major things and extremely minor things. And but I felt guilty this time because I was so glad that phone wasn't ringing with that familiar ring. And I was relieved, not just for me, but like, Yay, Dad doesn't have to suffer anymore.
For him. That was my thought when my mom passed, thank God, she's now at peace
as humans, because we're human are our minds render all these memories of things we could have done better. I think I might have mentioned to at one in passing the when we spoke first that, you know, everybody who has someone who is living through dementia knows what it's like to be asked the same question. Again, and again, and again. And one time when I was visiting him, I was in his his little private area of where he in the cubicle thing where he lived in. And he shared a room with someone at this point, and I said, you know, Dad said, When are we going to lunch? Oh, well, Dad, it's 10 in the morning right now. But, but I said, you know, we'll go to lunch. I said, I promised you, you know, I'll take you to lunch, whether it's in the dining room or elsewhere. And of course, in the next 20 minutes, when are we going to lunch? They may not be serving lunch anymore. When are we going? When are we going? And so because I'm human again. I raised my voice, I got frustrated. Dad, I promise you. When it's time for lunch, I'll take you to lunch. And I felt guilty, of course, and then he decided he wanted to have a nap. And that's fine, because I might have needed one as well. And so I said, so I said, Okay, Dad, why don't you take a nap, I said, I'm going to go on an errand. I stayed in a motel hotel every time I visited him. And I'll come back. I didn't say I'll come back an hour because it's irrelevant. Irrelevant. I'll come back and we'll go to lunch. So I did come back. And but I felt morose the whole time I let him have his nap. I came back and I said, Okay, Dad, we're gonna we're gonna go to lunch. But I said before we do, I want to apologize. I raised my voice. I was really frustrated. And I just I'm sorry, I'm really sorry for raising my voice. What are you talking about? When did that happen? You mean? You mean today? When was this? I was like, okay, Irene, think about it. Yes. On the other hand, it was inappropriate that I raised my voice against a loved one whom I cared for so greatly and still do. But it's understandable,
and they most likely will have no recollection of what you did.
And that says this, I wish I was living a block away. So I could just keep coming back and saying, I'm sorry, Dad, I'm sorry, dad. But I couldn't. It's just a very difficult disease for everybody concerned. No one. Even the experts aren't that expert because everybody's internal experience of the disease is different. Dementia is dementia, but it's different from my father, Don. cancer is cancer, but it's different from my father, Don, it's an individual experience.
I think Maria Shriver said once you've seen one case of Alzheimer's, you've seen one case of Alzheimer's.
One case, exactly.
Your stories are so sweet about your dad. He was a nice man, wasn't he?
He was he was a nice man. He was very respectful of others. And he never lost his sense of humor. Which is amazing, because I also have other close people who forget humor, but who became violent, and this is not uncommon, who became combative? Not uncommon, right? So that was a gift, that he didn't lose his sense of humor, and he didn't lose his sense of who he was. He lost a lot, mind you, but he didn't lose his true essence. And that was a gift. And my brother and my sister and I are very, very grateful for that
Well, you did a beautiful job taking care of him long distance, which we all know is just not easy. It's tough. You figure out a solution to one problem. And the next day there's a new one that crops up
or the solution that worked for yesterday's problem doesn't work for the same problem the next day.
Well, I think that's probably a good place for us to end our conversation. And we we hope that people out there listening have have learned a little tidbit that they can Use and find useful and helpful. Thanks, Irene for joining us today.
Oh, you're welcome.
We will leave information in the podcast show notes regarding the book you wrote called Requiem for the status quo. It has so many good tips and a lot of information for people out there doing long distance caregiving. And also it does bring up little tips about other types of dementia that a family caregiver can face. So it's very helpful. Oh, and thank you so much for taking the time to join us today. Thank you and for our listeners. Please join us again soon for another caregiving podcast episode on spotlight on care.
Spotlight on carers 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