Dementia, Covid19, Oh My

New normal in dementia care Memory Units in the age of Covid19. Social distancing? Right. Live in the moment. Honor the caregivers. Help the helpers.

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Credits

Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Sponsored by Abridge

Thanks to these fine people who inspired me for this episode: Allison Cofone, Rebecca Archer, Tania Marien, Mary Anne Sterling, Geri Lynn Baumblatt, Jill Johnson-Young, Susan Murphy, Carol Zindler

Related podcasts and blogs

Dementia Friendly City!

Family Caregivers: Hospital to Home

Caring for Parents. It’s Their Life. Open the Door.

About the Show

Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

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The Show

Proem

Professional Talking Heads spout a nebulous New Normal in Coronavirus land. I slip into anticipation of the new normal, as well. I’m sure we don’t have a clue how much our lives are beginning to change. We are in the fog of unsettled. We are dazed and can’t see the feet we feel on the ends of our legs. When my dad died, when my son died, I was in that fog sitting on the precipice, gazing into the abyss of grief. Welcome to the first day of the rest of your life! People with a new challenging diagnosis, facing death, and family members of those sliding into dementia, know that eerie foreshadow of a new normal. Last week Jill Johnson-Young spoke about the Dementia-Friendly City, Riverside, CA, created for a more positive new normal for family holding onto life with dementia. Today, we’ll talk with Stephanie Oden about managing a Memory Care Unit and Jennifer Keeney about her dad living in a memory care unit in the age of Covid19.

Introducing Stephanie Oden

Stephanie Oden is a nurse who has worked in nursing homes, hospitals, adult daycare, mental health, private duty nursing, and assisted living. Her passion is memory care. Every day is a new day. Stephanie, Executive Director at the Gardens of Riverside Memory Care in Riverside, CA., loves to sing and dance, although she claims she doesn’t do either well. A person after my own heart. Stephanie won CALA Assisted Living Advocate of the Year award for 2018 and 2019. Her career goal is to help find a cure for Alzheimer’s and other dementias so she can be unemployed. May it be so. Stephanie and I spoke near the end of March about dementia, the memory care unit, and the Coronavirus.

Stephanie Oden: We have two buildings. All the rooms, all the residents have dementia or Alzheimer’s disease. Our maximum capacity is 96; now we have 64 residents. We take care of all their activities of daily living, and no matter if they are in the early stages of memory loss or advanced stages.

Coronavirus, social distancing, Memory Unit

Health Hats: With the challenges of the Coronavirus, your memory care unit must be facing considerable challenges, especially without family being able to visit.

Stephanie Oden: It is challenging. Part of social distance distancing is being six feet apart, or if you’re in assisted living, they may want you to isolate to your room. In memory care, those are difficult to achieve. I’m not saying they’re impossible, just difficult, due to the diagnosis. If our residents don’t want to be in the room, we cannot force them to be in the room. We do our best to keep them from being in large groups, congregating, sit two at a table and start an activity with the two of them. But it’s a challenging aspect in memory care to do social distancing.

Present and not present

Health Hats: I can imagine. My friends who have a parent in a memory care unit. I see that it can be more difficult emotionally for the child, the adult child, than the patient. In the sense of the resident doesn’t know, doesn’t remember what’s going on, whereas the adult child has a hard time that they’re not able to visit.

Stephanie Oden: We started videotaping our residents. I send videos to family members, just a quick little, ‘you want to say hi to your family?’ Of course, I have to guide them some of them in the conversation. I was asking them, ‘how are you doing today?’ so their families know they’re okay. They can see them, they hear them, and we’ve been sending them out. We have one family member that came on Saturday to his mom’s window to visit with her.

Health Hats: I had heard how strange it is for some of the residents to FaceTime in the sense of not really understanding that that little picture on the screen is their family member.

Stephanie Oden: Yes, that is difficult. I have to be honest, Danny, I had a hard time with it at first, too.  It is difficult for our residents to understand. We try to be patient and sit there and talk them through it. I’ve put my face in the screen with them so they can see, oh, it’s both of us, and that’s your daughter. You have to do a lot of outside of the box thinking in memory care.

Managing risk

Health Hats: How is it for the staff? The work is hard enough, and the staff’s doing personal care. How is that for them in terms of worrying about the risk to themselves?

Stephanie Oden: That’s always in the forefront. But you have universal precautions and personal protective equipment. We’ve been blessed, and there’s no signs, no symptoms, anything like that. But it’s always in the forefront of your mind with anything, the flu, a cold, anything. We make sure we’re following CDC guidelines, all the mandates and keep them abreast of all the changes that I’ve been made aware of. I bring them to my staff.

Health Hats: Some places have a shortage of protective equipment. Is that an issue for you?

Stephanie Oden: Right now, no. We are good right now. We had some already here. We ordered some more and then our corporate office recommended that order more. So, I ordered more. That could change tomorrow depending on the situation, but as of this moment, we are good with our personal protective equipment.

Telehealth

Health Hats: Residents of memory care have routine medical issues, and they’re transferred to a hospital, a higher level of care. How is that now?

Stephanie Oden: I haven’t had any issues with that, but if it’s a non-emergent appointment, we are canceling and rescheduling.

Health Hats: And if there’s an emergent appointment?

Stephanie Oden: Like everybody else, they still go to their appointment.

Health Hats: Are you using telehealth?

Stephanie Oden: We just started using that with our medical director yesterday.

Health Hats: So, your medical director will be on a tablet and go around with a staff person?

Stephanie Oden: Yes, with myself, my nurse, or one of the med techs. The medical director will talk to us about what’s going on. We’ve been blessed with nothing severe or serious right now. We talk about it, and she talks to the resident, and sometimes the situation’s handled. Sometimes it’s like, ‘Oh, it was just good talking to you again.” And then we take care of it later in the wellness room.

Health Hats: My experience with assisted living and nursing homes is that staffing is usually a challenge in any circumstances. And now, it seems like this is more labor-intensive.

Stephanie Oden: Oh, yes. We’ve only had one staff member recently who had to call off because of childcare. We all pulled together, all the managers, all the front-line staff. We work together to make sure that our residents are taken care of and living the best possible life. What we do on Thursday, may be different on Friday.

Health Hats: Are you still accepting new patients or new residents?

Stephanie Oden: Yes, we are. There’s no ban on that. Some facilities have patients or residents that need to be discharged. Yes, we will accept new residents. There’s a protocol we follow, but we are accepting new residents.

Now a word about our sponsor, ABRIDGE.

Use Abridge during your telehealth visit with your primary care or family doc. Put the app next to your phone or computer, push the big pink button, and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations.

Advice for families

Health Hats: What advice would you give to family members who have family members as residents in memory care units at this time?

Stephanie Oden: Call often for peace of mind. Call often. That’s why communities have multiple phone lines. Call often. My family members all have my cell phone, and they can call me anytime. Text me anytime, email. You can FaceTime, and there’s always a staff member in a memory care community that can help you talk to your loved one.  It’s an extended family – memory care communities – you have to be able to help the resident and the family. That’s what you’re there for.

Health Hats: Wow!  Upbeat, determined, one foot in front of the other!

Re-introducing Jennifer Keeney

The Keeney girls value real face time, daily hands-on with their dad, Jerry.  Jennifer had moved from Texas to Colorado to be with their dad every day to manage his care and provide that loving warmth for Jerry. I called Jennifer soon after I heard about the nursing home hotspots in California to see how they were doing. You can imagine the angst she felt. Fortunately, Stephanie and Jennifer’s experience have been positive and relatively Covid19-free. Other people have been more affected, tragically so.

Health Hats: Hey, Jen, thanks for joining me again. I love talking to you and seeing you, too. We talked three or four months ago. We had an episode with you and your sister, and we talked about your dad, Jerry, and how it’s going in the memory care unit. Now it’s the Coronavirus, and I know that you’re not able to see him anymore. Can you tell me about that? What’s been happening?

Face Timing. What does he see?

Jennifer Keeney: It’s been a journey as always with all of this. The thing that is happening right now is I feel like the place where he lives; they’re doing an excellent job of really trying to care for the people that work there and care for the people that live there. For me, it’s finding out what was going to be special about memory care. Because my dad can’t just pick up a phone and talk to us even though we can’t come and visit. So, I was helping them come up with some ideas about how we could do that. They are being very kind and letting me telephone their personal phone and Face Timing with dad in the morning, which was great.

Health Hats: Face Timing on a staff person’s phone, and then they bring it to him.

Jennifer Keeney: Exactly, getting him from breakfast when they would take them back to his room and taking out their phone and calling me up. We were Face Timing on an iPhone, basically,

Health Hats: Did he get that was you?

Jennifer Keeney: He does, because I always say, ‘Hi, Dad, it’s Jenny’ and he smiles and laughs and seemed so happy to see a smiling face that he seems to recognize somehow. Yes. But, of course, with everything they have to do over there, which is following all the guidelines here in Colorado, they were finding it extremely difficult to meet all the possibilities of what people wanted. I thought it was pretty ingenious what they did. They have a bigger computer on a rolling cart that somebody, one single person, goes around and takes it. You have to make an appointment with the front desk, and then they will go and let you talk for about 15 minutes to that person. So, they roll it in there, and dad loves it because it’s a big screen. After all, it was hard with the little screen. When they started doing that, I noticed a difference. I think this is kind of fun. What can you do with somebody in memory care? It’s a pretty one-sided conversation. But I show him photos on my computer. I read poems to him. I take him for a walk outside.

Health Hats: How do you do that with your phone? Oh, you go out, and you show him a plant or a tree or a bird or something?

Jennifer Keeney: Exactly, different views. I play my flute for him. That’s what we’ve been doing. Their memory care unit is so small, only about 12 people, and nobody has it. They’re still social distancing, but you can’t do that in memory care so much. They’re trying to, but they get to do some activities still and eat and things like that. So, it’s a little different. The whole rest of the residence is getting meals in their rooms, and no activities are going on. They all have to get their temperature taken when they come in. They’re wearing masks now, starting yesterday, residents to everybody. That’s what I’m curious about. How are the residents dealing with that in memory care? So, I’ll talk to him tomorrow morning.

In the moment. Does it matter?

Health Hats: I can imagine it being freaky. I wonder how you transition somebody to accepting that everybody has masks on?

Jennifer Keeney: I haven’t talked to him about the virus because he doesn’t remember. It seems ridiculous to keep bringing it up and kind of mean. He doesn’t understand it. He can’t understand what’s going on.

Health Hats: Seeing you on a full-size screen without a mask is probably better than if you were still able to go, but you were gowned up and face masked?

Jennifer Keeney: I think he just understands things in the moment. I did say it to him the very first time that there’s this bad virus going around, and it’s hasn’t been here before, and it’s hurting a lot of people, and they have to be really careful. I just think he just accepts things as they are in the moment. That’s one of the gifts – might be too strong of a word – but it’s pretty amazing.

Health Hats: Yeah, just the moment. It must kill you not to be there.

Jennifer Keeney: It was hard at first, mainly because I do a lot of things for him, but know that the people, certain people, are caring people. They know that I like my dad to get shaved, and I like his nails to get cleaned, and I’d like him to have his essential oils on him. Those two people are still doing that. He’s declined in the disease more in the last few months.  It matters to me a lot, but I don’t know how much it matters to him that I’m there when I’m not there. Like he loves it when I’m there. Don’t get me wrong, but I don’t know that he remembers that I’m not there. That idea of love and being there to love somebody – I feel grateful that there are such caring people there. Cause that’s what I miss. I wrote to Miguel, the director. You met him. He’s head of all the caregivers now. I wrote to Miguel because he always says to me once a week, ‘Jen, if you ever want a job.’ I did write to him because my university stuff is going to stop at the end of May. I wrote to him, ‘Hey, I’d like a part-time job.’ I think I would like to work a couple of days a week if they wanted to hire me. We’ll see.

Health Hats: What role would you play – activities, personal care.?

Jennifer Keeney: Assistant activities director is open, but that’s a full-time position. So, I applied for both part-time if they would consider it. I also applied just for the caregiver role.

Holding his hand

Health Hats: So, he’s declining, and he’s old. I can’t imagine how hard it’s going to be as he declines further and not to be there holding his hand. Things will be different by then, but I don’t know. I just think, God, for the caregiver people, I mean the family caregivers, the loneliness of not being able to be there when the going gets tough. How do you?

Jennifer Keeney: I guess I haven’t focused on that too much. I mostly try to stay in communication with the people and the place. They said, ‘Remember, no news is good news.’ I wrote back, and I said, ‘well, that’s not going to do it for me. Communication is going to be good news for me. If it’s once a week, it’s once a week, but no news is not going to help my family and me with communicating with our father about how he’s doing.’ I’m more focused on that he’s safe, that he’s as happy as he can be. That whatever happens with all this. I will be there when it’s safe to be there again for everybody’s sake. If I do happen to get a part-time job there, then.

Health Hats: Right. Then you’ll be there more often, but then in a way, you’ll be more at risk.

Jennifer Keeney: I feel like we’re all at risk. He’d be as safe as you can be. I intend to do that for everybody. And I try to treat everybody like I have it and do my part. I think about what happens if people start getting it there? Right now, no staff, no people in our neighborhood, have it. We have several people and even a person that has passed away already. I mean, it’s close to home here. The people that I’m going to be moving into their place have it.

Health Hats: Oh, they do?

Jennifer Keeney: They’ve been symptom-free now for two weeks. It’ll be on the 13th of this month. So that’s why I’m moving in on the 14th. They said, can you take a loved one home if something gets really bad because they’re not sure if they’re going to have the staff and stuff if something terrible happens? Dad needs 24/7 care. But if you’re home 24/7, that’s different than it used to be. It’s weird. I did talk to them. I said, ‘I understand that for people that are in assisted care, but memory care is different. You can’t just hire anybody these days to come in and help. You would have to be on all the time. I know it’s not possible because there’s just me, I don’t have a partner. It’s just not possible. I know myself. I’m so grateful to any that everybody’s okay there. They’ve got to be working hard.

Joining the staff

Health Hats: Are you able to play music virtually for them?

Jennifer Keeney: That’s what I was going to ask Tina this week if she would like me to, because I was talking to the other activities person. All my musician friends are doing that kind of stuff right now, and I’d be happy to. So, I’m going to ask them.

Health Hats:  Would it be a decent sound on a big TV?

Jennifer Keeney: I think it would be. When you record something, it’s different than when it’s live, though. Live is so meaningful to people. I’m going to ask them. That’s on my list.

Reflection

Sigh. Jennifer and Jerry are family to me. I’m sad he’s failing; crushed I won’t see him again. Living and working in a potential or real Covid19 hotspot boggles my mind. When I was younger – an ICU, ED nurse, and paramedic, I’d jump in with both feet. Now I can’t. These healthcare workers and family members are my heroes. Stephanie and Jenni are so matter of fact. These are the circumstances; we’ll deal with it. Although Jenni knows she can’t take Jerry in, I think about those folks contemplating adding someone to their pod. My pod is my wife and I. Upstairs – we have a duplex – that’s another pod: my son and his family.  We’re separate pods because my daughter-in-law is a nurse, a high-risk job, and I’m an oldster at high-risk. What if your daughter, brother, mom, dad, aunt, dear friend can’t stay where they are now? They live in a nursing home; they have a stroke; they become unemployed. You could and want to accommodate them. How would you blend in that additional person or people – family in need? It depends. If we assume everyone has Covid19, then the new person would need to quarantine for two weeks. What if you have limited space and one bathroom – same problem as when someone is tested positive? You seek guidance and do the best you can—tough choices. Honor the caregivers, help the helpers. Honor yourselves. Thanks for all you do.

Danny van Leeuwen

Danny van Leeuwen

Patient/Caregiver activist empowering people as they travel toward best health

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