Welcome to CareAware Video #4—Oxygen Masks

Introduction

Caine: Evidence-base medicine has clearly said that if someone has chronic stress to their body over an extended period of time, you are at risk for developing a life-threatening illness yourself.

Boustani: Your risk of death is higher just by your role of being a caregiver, after taking into account all your other condition.

Boustani: So caregiving, if it’s not managed well, can become, in my opinion, a disease, a chronic disease that will impact your health outcome.

Turo-Shields: I find that often times, people are afraid to seek help because of what it says about them. That it says “I’m not good enough. I’m a failure,” which is detrimental. It’s detrimental to everybody involved.

Ventresca: The journey is probably longer than you thought, and we’ve got to take care of ourselves for the long run. And, the whole oxygen mask metaphor is great. My sister, Laura, tells me that from time to time. Put on the mask for yourself so you can keep taking care of dad.

Austrom: If you’ve ever flown, you know that before the plane leaves the gate, the flight attendants give a safety demonstration. In it, they show the proper use of seat belts, point out the emergency exits, and discuss what to do if an oxygen masks drops down in front of you.

Austrom: Typically, they say something like this: If you are travelling with a small child or someone who requires assistance, secure your mask on first,then assist the other person.

Austrom: The reason is simple: if you’re unconscious, you can’t very well help the other person. So today we are talking about oxygen masks as a metaphor for taking care of yourself first.

Austrom: Hi, I’m Dr. Mary Austrom, the Westly P. Martin professor of Alzheimer’s disease education here at the IU School of Medicine.

Bell: And I’m Orion Bell, president and CEO of CICOA Aging & In-Home Solutions. We’re your hosts for this video series, and we’re glad you’ve joined us. 

Bell: In the previous video, we discussed how the emotions of caregiving can produce chronic, long-term stress with life-altering and even fatal health consequences. Today we’ll be looking at the importance of respite and preventative self care to reduce stress.

Bell: Welcome to CareAware.

Boustani: Time is a luxury. All of us have only 24 hours a day to live, eat, sleep, have fun, and work. When you are a caregiver, especially if you are a caregiver who live with their loved one with the disability at home, you technically are working 24/7.

Baustani: So the first step is you have to look at your caregiving as a work. And it’s almost like working two to three full-time job. So, if you’re working 40 hours a week already, and you’re working another 80 hours, sometimes 120 hours a week as a caregiver, you got a total of a 160 hours a week.

Baustani: So if you are working 120 to 160 hours a week to the best of my knowledge, you’re still human, you’re not a saint. It’s going to be a matter of time where you’re going to crash and then your loved one will suffer.

Harden: The best thing to do is realize we can’t do it all. I can’t do it all. You can’t do it all.

Caine: You have to take care of yourself because if you don’t take care of yourself, you’re not going to be around to be able to take care of anyone, or you’re going to require a caregiver for yourself. It is so important to have that good mental and physical well-being.

Bell: It’s important to be realistic as a caregiver about what you can and can’t do. So start by taking a look at everything your loved one needs. Then consider, what can you reasonably do. And what do you need help with. Then start building your team.

Austrom: When you are stressed out as a caregiver, your loved one will feel that and both of you tend to suffer. Conversely, when you feel at ease, your loved one will experience a greater sense of comfort, and the caregiving experience itself can take on new meaning and purpose for both of you.

Bennett: If you are thrust into the role of the caregiver, either because you are a power-of-attorney or healthcare representative, or guardian, you need to build your response team, you need to lead that response team. But that means getting some allies lined up. That means perhaps a good elder law attorney who can help with questions along the way. It might mean a nurse practitioner, it might mean a private geriatric nurse to help bounce ideas off of. It may be your siblings. You need to help watch out for these things, take notes, report back to me, let’s confer about this. You can’t do it alone. You got to get your team in place.

Hill: Delegate, delegate, delegate. You find what you’re good at, and then you learn what the people around you are good at.

Moyo: Your caregiving team, or who needs to be in your caregiving team should be a team that’s both wide and deep. So you start, obviously, with family. You start with building around siblings, being around children, older children, your siblings, your relatives. And you find key areas where people can be involved and be engaged. So, it may be a situation where you have people tasked with just research, right? Researching the community organizations around the area that can support the needs of your family member. Or you have a family member who’s an expert in financial planning, or is a lawyer, or whatever the case may be, you bring them into that team.

Moyo: Then the second layer is your friends, your faith community, your colleagues, your co-workers. And you use those folks for different resources. It may be for providing a few minutes of respite care with a trusted friend, or it may be an opportunity just to take a break and walk, and have a casual conversation with a colleague so that you take your mind off of the daily stresses of caring for somebody.

Moyo: And then, I’d say that third ring would consist of subject-matter experts. So your area agencies on aging, your physicians, your nurses, your geriatric care managers, the hospital social workers. So that team of experts that you can call on when you need to find out what are the next steps, or what is the treatment plan for my loved one. Where can I go to find respite care. Where can go to find… If it’s a situation where we need to sort of transition into the long-term care, where can I find resources around that type of information.

Moyo: So, building a team that’s both wide and deep will ensure that your caregiving journey is one that’s a successful one, and that you find the best way to care for your loved one, as well.

Turo-Shields: I also find sometimes that people don’t seek services because they believe they’re protecting their loved ones. I’ve heard people say, “They won’t have anybody come into the home, or they’ll send them home.” And I said, “Have you tried?”

Turo-Shields: And that may have been the case three or six months ago. But the one thing that we know about caregiving is that it’s constantly changing. And so, what a loved one may or may not have said they wanted, or what a loved one may or may not have been willing to do three or six months ago, may be completely different. Because they may have come to the point when they recognize my son, or my daughter, or my spouse just can’t do this anymore, and that they don’t hold that against them.

Saxman: I had a gentleman in Avon who had 14 women who gave him a day a week for six years. And they had a schedule done and they rotated in and out. I was totally impressed. And he didn’t even have to manage it, one of the women from the church managed it. And it was all because he asked. And people are just sometimes are afraid to ask.

Ventresca: So you got to know you need help, you got to know who to ask, you hopefully have somebody, and then you just got to ask. And when you ask for help, you’ve got to be pretty clear what you need….you need to just be brave and do it knowing if they can’t do it, that you’re going to be okay with that and not waste a lot of negative energy.

Ventresca: And then, I think it’s really important if you do ask for help and you get it, that you say thank you, that you are grateful and express your gratitude.

Respite

Bell: Even though caregivers often find great fulfillment in providing care for their loved one, the physical, emotional and financial strain can be overwhelming without some relief. 

Austrom: That’s what respite care is: a break for the family caregiver. It provides temporary relief from the burden of responsibilities.  Studies have shown that respite care is essential to the primary caregiver’s health and wellbeing. It can also prevent or delay premature institutionalization of the care recipient, and  can also reduce the incidence of abuse and neglect in extreme cases.

Boustani: So you have to look at your caregiving as another two to three full time job. And you need to decide what will take. You might end up thinking about doing part time caregiving job with your other family member. So, you end up deciding, “Look, there’s 120 hours of work as a caregiving we have to do to our loved one. I’m going to give it 20 hours.”

Baustani: And you have to look for another eight caregivers who can do the 20 hours. If you cannot accommodate that, then you need to hopefully work with our team and your area on aging to investigate the current local resources or community resources to cover the 120, 160 hours of caregiving.

Baustani: But, working as a caregiver and working as a full-time paid position for a total of 160 hours a week, you’re not going to be able to continue that for more than a couple of days, a couple of weeks max. You’re going to crash. So that’s my recommendation, is to look at your caregiving as a really full-time work and see if you have the capacity to work two full-time job, or three full-time job, or not.

Keers: Respite simply is a break….It’s a time that’s blocked out of their schedule where they can do with that whatever they like to do. They could take a walk. They could sit in their car and cry. People tell us that they do that. They can go to the grocery store or take care of some other business that needs to happen. That’s the beauty of respite, is it gives the caregiver a break to do with whatever they want to do knowing that their loved one is taken care of by somebody who cares about their loved one.

Turo-Shields: Sometimes that’s just informal, and that we have somebody come in the home and take care of your loved one while you go out for a couple of hours. Other times, there is more formal opportunities to have somebody come in and provide respite care.

Keers: And so often that’s when we recommend bringing in an individual, professional or somebody from their faith community to sit down with the caregiver and the care recipient and talk about that respite is a way to prolong the care in the home. To delay institutionalization, to maintain the goals that they’ve set. And so often when that gets explained by a third party, then the care recipient is more willing to accept the help as well.

HIll: Well, I have a now 16-year-old, kind of in the process of trying to make sure that I was nurturing and still giving him somewhat of a normal lifestyle… So, a lot of times I had to incorporate my respite care time with my mom and my daughter, so that I can still be an active part and play an active role in the things that he has going on. So respite care doesn’t always mean taking a nap… a lot of times for me it means running my teenage son from one event to another, from one rehearsal to another. So I have to always figure out how am I going still be mom and separate that from being a caregiver.

Oetjen: If you find that you’re becoming overwhelmed and the stress that you’re feeling is really great, one thing that we suggest is that you can put your care recipient in a respite for a little while. You could also ask a family member or a close friend to come over and give you a day off. Maybe they could come over and spend the day with your care recipient so that you could get out and be able to have a little time to yourself.

Mary: And it’s to the point where I have learned that if you take care of yourself, go out and get a new hairstyle, get your haircut and take a massage, take a bubble bath. Take up a class. Do something that you enjoy, get away, that it will be beneficial. The more I did something for myself, I found out, the stronger I became and was able to handle the situations that arose.

Hill: I love to shop. I’m a shopper. I say that’s rehabilitation for me. So, I had to find things that I could do that were around home. It was allowing me to just kind of revive myself and rejuvenate myself. So, I took my shopping in and I began to… I learned how to paint. I learned how to sew some things. I learned how to do some decorating. I learned that I actually loved yard work.

Hill: And so a lot of times when I would come in from a stressful day at work, my neighbors would see me outside mowing the lawn and they’re like, “Are you nuts?” And I said, “No, I’m reviving. I’m rejuvenating. I need to have this time.” And I would spend time, I’d spend hours, sometimes a day as my schedule allowed for me to, planting my flowers. And you constantly have to learn to reinvent your situation to find ways that will make you be the best that you can be for the people, the person or the people that you have to care for.

Hill: I have to go away and rejuvenate. I have to go regroup and come back so that I know that my head is fresh in the game, and I can stay and do this for yet another long haul.

Saxman: Respite, at least, one whole day once a week. Some people need more than that. If you’re 85 and you’re taking care of an 85-year-old, then you’d probably need more than a day, because your reserve is not going to be as high. But you need to do what’s going to work for you and some caregivers need more than others. And so, you kind of have to look at, “What’s my caregiver reserve? What resources do I have available to me? And how much can I get? What’s the benefit to my loved one? What’s the benefit to me?” Because the respite is not just for you, but sometimes I think it’s for your loved one.

First Responder

Austrom: As a caregiver, you are a first responder. So that means you need to keep yourself in as good of healthy condition as you would except from your doctor. 

Boustani: A typical caregiver who is responsible for their loved one suffering from cognitive or physical disability have the following bundle that they can try to implement. We call it, “Caregiver Health Prevention Bundle.” It’s very, very simple, but it’s very hard to implement. It has four elements. Number one is taking time off caregiving tasks. … Every week, if you are the primary caregiver of loved one who have cognitive disability in particular, you need it’s minimum to take off eight hours from caregiving role, not just physically but psychologically. That eight hours cannot be one hour here and one hour there. This eight hour has to be in a bundle, in one-time slot. You can split it into two periods or four periods, or eight periods….

Boustani: The second one is that you’re attendance and participations in monthly supportive group. You become a part of a social network of people who speak your language, have your perspective, are on the same journey of caregiving like you. So you feel that you have a backup plan, you have a community you belong to. And you have to attend that community at minimum once every month.

Boustani: The third component of the Caregiver Health Prevention Bundle is having specific and detailed crisis plan. We can predict what kind of crisis you will be facing in the future as a caregiver of somebody who’s suffering from cognitive disability. And you should work with your providers on creating a crisis plan as detailed as possible, and rehearse that plan, and be ready for it. …

Boustani: The final component of our Caregiver Health Prevention Bundle is coaching you and increase your capability on problem-solving. You’ll be facing a lot of problems as the primary caregiver, and you need to develop various strategies on how to solve these problems….

Boustani: So these are the four components of our Caregiver Health Prevention Bundle… and you’ll accomplish amazing win-win. First, amazing impact on the health outcome, the quality of life, well-being of their loved one who’s suffering from the disability. And second, amazing impact on their well-being, on their own well-being as a caregiver, their own quality of life, and their own health.

Exercise

Austrom: Besides being mentally rested so you can make the best decisions possible, it’s also important that you take care of yourself physically. Taking care of yourself is what will give you the energy to take care of all those other responsibilities that you have. You cannot take care of others if you yourself are ill.

Turo-Shields: The other thing that happens for many people is they may fall into a very sedentary lifestyle. And that may just be because of the way the day plays out. Maybe they’d go over to care for their elderly parent and the activity of the day is to sit and watch television. What we know, what the research tells us is that sitting is the new smoking. It has such adverse effects on the body and that lack of activity is very detrimental to the individual, the caregiver’s health.

Saxman: I’m a firm believer that exercise can make a big difference in reducing stress. It’s a place to put emotions. It gets things out, and it doesn’t have to be extraneous. It may just be a walk around the block. It’s a good way to take a break. Some people do chair yoga in their house or do something to kind of get some physical activity out of them. I think it’s a great way to reduce stress and relieve tension and feel better about yourself.

Duncans: It’s just like your escape. I never thought I would even like or enjoy running at all. And now I look forward to my next run, which is really weird for me.

Duncans: Like we’d argue of who gets to mow the grass sometimes. That it’s a way out, it’s a mindless activity. You’re just going to walk and zone out for a little bit.

Hill: Make sure that you do something to reboot and rejuvenate yourself at some time during the day, sometime during the course of the week. If it’s 30 minutes, if somehow you’re able to establish a timeframe where you can just relax and rejuvenate yourself. You have to understand, you’re doing this for the long haul. And keeping yourself in the best possible condition is what is the most important thing.

Caine: And in order to do that, it means that you have to exercise on a regular and frequent basis, and you have to have good nutrition, and you have to get plenty of rest. That means sleep. And in order to do all those three things, you have to have a designated amount of time that you take care of yourself and your needs where you’re no longer the caregiver.

Self-Time

Bell: Me-time is not a luxury; it’s essential. So treat it like you would any other appointment. Put it on your calendar and then keep it. Just make sure it’s an opportunity to be relaxed and restored.

Harden: Do something for yourself. If you can, go shopping, go get a massage, go work out, go on a trip. Do something for yourself. And that is the thing I’ve noticed most about caregivers, is we don’t take enough time for ourselves. And sometimes I know it’s not possible, but there are times in between when maybe that loved one doesn’t need as much attention, or someone may volunteer, take advantage of it.

Hill: A lot of guys have the “man cave,” as my sister so affectionately refers to the area that I created for myself in my home. She says, “Oh, you’re going to the Orange Palace so you can rejuvenate.” I said, “I’ve got to go take me some time.” And so, I had to create a space in my house that was just for me. For me to be able to take some time where I was still close at hand, I was still available to the people that I needed to render care to, but I just had to have somewhere where I could go and relax.

Lee: Definitely writing helped a lot. One of the blogs I wrote was the day that he died and I couldn’t sleep at night. I wrote out those entire blog just that day. And that was very cathartic, and just being able to get everything out there that I was feeling at that time.

Lee: I was a theater major in high school. I mean just theater, photography, writing, all those types of things, I just really enjoy and it’s a good way to deal with emotions.

Saxman: When your loved one sleeps, take a nap. I think what happens is is a lot of people think, “Okay, this is my chance to do a bunch of stuff.” And maybe it’s your chance to take a good nap. And that may be your biggest benefit of all.

Social Connections

Austrom: Loneliness and the sense of isolation that sometimes affects caregivers impacts not only their ability to think, but also the functioning of their immune systems. Research has shown that this can be as damaging as smoking or obesity. So it’s so important they we remain connected, keep those social engagements going. Visit with people besides your loved one, we need to keep our socialsphere active. 

Saxman: I think that retaining social connections is a huge impact because what happens is is that sometimes when you’re taking care of somebody, your friends don’t really know what that experience is like, they don’t know what’s going on, and they may or may not know how to help. And so, if you keep those doors open, if you keep that monthly luncheon appointment open where you’re not talking about caregiving, you’re talking about whatever is going on in the world, or whatever is going on with your friends, it’s an escape. It’s a great way to keep those social connections up, because you need those people in your life.

Humor

Austrom: You should also try to maintain your sense of humor. Laughter, after all, really is the best medicine, and has been shown to strengthen the immune system, boost ones energy level, reduce pain, and insulate you from the damaging effects of stress.

Lee: It’s difficult to do while you’re caring for the person, but I think humor is probably the most important thing. It’s keeping that sense of humor, keeping that perspective of just… I mean, you’re not making fun of the one you love, but you’re laughing with them, or just laughing at the situation. When you lose your humor you’ve almost lost the battle there, and it’s just really important to keep that going.

Mark: About a year before he died is the last time we flew out to California for Christmas, for the holidays so that dad could be with the rest of the family…he drove my sister crazy. He kept telling her, he kept bugging her saying, “When are you going to take down that Christmas tree?” Because he was afraid it was going to burn down or something like that. So he was relentless about bugging her to take down the Christmas tree every single day. And finally she did, and all of a sudden he looked and said, “Why did you take down the Christmas tree?” He said, “I liked it!”

Saxman: I think laughter is huge because laughter gives you joy, but it also diffuses tension and if you can’t laugh at something sometimes, then you just want to cry. And I think the firmer and the better response to something sometimes is to laugh. When we talk about people with dementia often times, their emotional memories are very strong. Their concrete memories may not be. So if you can get somebody with dementia to laugh with you, that’s a gift. If you cry, they’re probably going to cry with you, too. But if you laugh, they’re going to laugh, too. They may not know exactly what happened, but they’re going to think it’s fun. And so I think laughter can make a big… It’s a huge impact on caregivers.

Faith

Bell: Others have found that what sustains them in times of difficulty is their faith in God. Trusting that God is present in your caregiving journey and provides strength for the task at hand gives people hope and sense of comfort. 

Turo-Shields: One of the most critical pieces of caregiving is drawing on faith, and that may be not only for the caregiver but also for the family member. Recognizing that this is process and this is a journey, and oftentimes when everything else seems stripped away, coming back to that sense of “this is what sustains me.” And for some people, again, when everything else is stripped away, their faith, their belief in God, their belief in a higher power, their belief in just goodness in the universe, whatever it is, is what sustains them.

Hill:  You need to find out what works best for you, for you to know that you have to be your best person as much as you possibly can be… If it means 15 minutes of being able to sit alone in your car, or be by yourself, say your daily devotions, say your prayer, whatever is necessary for you to be able to know that you’re giving the best to the people that you’re caring for. Make sure that you take time for you, to know that you have to be the best person that you can be.

Ventesca: But one of the things I kind of love to do is I go to 5:30 mass at St. Thomas Aquinas and I sit in one of the areas where nobody else is and I sing really loud. And that’s great therapy for me, is singing really loud. I feel better when I get out. And just having a quiet place to go.

Saxman: Using those faith supports is extremely important. The value of prayer, the value of your faith network can be huge. And utilizing it in a way can make a big difference for folks. I think people with a strong faith network usually are really good caregivers because they’ve got that sense, a really good sense of self and they’ve got a place where they can put things, and address their needs on a different level.

Next Video

Austrom: We hope you are persuaded after watching this video to take better care of yourself physically and emotionally. Ultimately, this will make you a healthy and hopefully happier caregiver.

Bell: In our next video, we’ll discuss the often unspoken and secretive issue of abuse. Abuse can take many forms–verbal, physical and financial–and can be directed at either the caregiver or the care recipient.

Bell: Please join us as we talk to experts about the signs of abuse and what to do if you suspect abuse of a loved one. We’ll hear from caregivers who have faced stressful situations and who themselves are the victims of abuse by those they care for. See you next time for CareAware.

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• What oxygen mask do you need to put on?
• Do you have a response team?
• If you could take one job off your plate, what would you remove?
• How can you involve others in your caregiving tasks?
• What struck you about Dr. Boustani’s Caregiver Health Prevention Bundle?
• Review the Caregiver Weekly Check Up