(Guest Lecture): July 2022 - The Real Cost of Caregiving and Caregiver Benefits

and we can get started. Perfect. Thank you everyone for joining. After 4th of July, I hope everyone had a great time. I thought this was a really excellent topic, especially, I guess I can't say post-pandemic, but getting behind everything that's gone on the last couple of years. I'm sure a lot of you have found yourself in the same position in caregiving for a family member or a really good, perhaps a friend. I would like to go through what the statistics look like as well as what caregiving or care partnering actually made. I want to explain that a little bit later and help you understand what options are available to you. Not just a family, but today we're going to be cuddling caregivers because it's very important. Unfortunately, sometimes it feels thankless, but it's a very important position. A lot of us find ourselves in, not just adults, but children as well. We're going to go through that. We're going to find a statistic, silent cost of caregiving because there's a huge cost. There's no dollars attached to it. Understand the benefits to the patients with familial care partnering, and where to find resources for caregiving. Next slide. The real cost of caregiving and the caregiver benefits. First, let's redefine this term caregiver. This is something I had to do when I was taking care of my husband. This change in perspective can go a long way in the quality of caregiving as well as your attitude of you as well as your person who's benefiting for your caregiving. A caregiver is generally a paid or unpaid member of a person's social network who helps them with activities of daily living, no formal training necessarily, and may not know the person. I try to look at this from a family perspective. Sometimes you may pay someone to come in. A lot of times they don't really know who that patient is, who that person is. I want to try to refer to person. A care partner, an agreement between the person with a chronic condition and their loved one to be partners in care as best they can. To help each other with the health and wellness and caring for each other. Know that person knows the person they're taking care of, and the caregiving is when needed, not necessarily all the time. Now, when my husband was ill, and there was times where he definitely needed someone to help him. Sometimes he was bedridden. Other times he was up walking, working, doing what he wanted to do. It's an understanding of who that person is, what they used to be like. The choice to take care of them. I wouldn't have wanted to be anywhere else with my husband. As difficult times we've gone through, that was the best place and the most rewarding position for me to be in. Next slide. What does caregiving look like in the United States? We're going to go back to 2020. This is pre-COVID for the most part. Overall, more than one in five Americans, 21.3% are caregivers to adults and children in the past 12 months. I'm sure that's probably higher. That's ARP 2020. It's probably a whole lot larger than that. 19.3% of the population are caregivers. 47.9 million people. That's a lot of people. 24% caring for more than one person. I can't imagine how difficult that must be. Caregivers report that the recipient of their service will have greater health and functional needs and often with more than one reported illness. Increased need with aging population. We know that's going to be ongoing. And lack of affordable resources. And most family caregivers receive no financial support whatsoever. That is a very difficult thing to put your arms around because when that person needs help, they need help. And a lot of times caregivers will be leaving their jobs. Next slide. Women are more often caring for more adults. 27% versus 20% for male caregivers. That's not surprising. If we look at nursing homes, a lot of the people there are women. They're older and there are very few men because unfortunately men, their lifespan still is not caught up to women. Those caring for spouse tend to focus solely on their care. Not on the care, their own care. Two out of three care recipients are women and four out of 10 are men. Averaging duration of caregiving is 4.4 to five years. Three out of 10 provide care for more than five years. How caregiving affects a spouse options to review. Who will care for the caregiver? That's huge. Where do you find resources and get help? And who are the caregivers? Children are not immune to these responsibilities. Unfortunately, more and more children are becoming caregivers themselves. Next slide. There's a silent cost to caregiving and I can totally appreciate this. I lived it. There's a loss of income because I left my job at the height of my profession time to stay home with my husband. There's a loss of savings as a result. I can no longer save toward my or our retirement or any other things we get going. There's a sense of guilt. A guilt for leaving your job, a guilt for spending more time taking care of a person and with your children, especially if your children are younger. My kids were in high school and they need to be transported to their function. So there's a lot of guilt that you gotta manage. There's a lot of frustration not being able to do enough. You'd never feel like you're doing enough. There's fear, fear of the uncertainty, not knowing what's gonna go on. There's the uncertainty. Desperation. I can't tell you how many times I was desperate for someone to come in and help me to give me a second opinion on what I was doing. There is a financial and emotional stress. There's loneliness. In the middle of the night when things seem to be going bad or you don't know what's going on and you're watching and it can be very lonely. Sense of isolation, how that can affect you psychologically. Despair, anxiety. And unfortunately, because a lot of caregivers do not take care of themselves, generally there's a loss of their good health. Next slide. But doing all of this, there is a sense of purpose. When you look at caregiving as being, as not being a job, but as a sense of cooperation and it's a combined sense of helping. It turns it into something more than just a job, more than just a thing you had to do every day. 61% of Hispanics report and 59% of African-Americans more often report that caregiving provides them with a sense of purpose. Despite performing more hours of care and care tax resulting in higher intensity care situations, compared to 46% white and 48% Asian caregivers. African-Americans and Hispanic caregivers report not having as much emotional stress, perhaps it's cultural. Though the reasons are unclear, I say it could be cultural, expectation to care for one's own family or community, which can buffer some of the emotional stress. In addition to this, I would probably put forth that a lot of those communities are usually closer knit communities and they don't live as far away from family. You have a tendency to stay close. So that's probably why African-Americans and Hispanic caregivers, this is just something they do. They take care of one another and they don't travel or as far away from the core family. Next slide. So some of the financial situation of caregivers. And many caregivers leave their job to take care of their loved ones. I had to do that myself. This move, especially when done during the height of a professional and financial career can cause a negative domino effect. Not just for the period of time you're there, it can go for the rest of your life. It's amazing. In women, I say they were the ones who take care more often the caregivers. If they're leaving their job to take care of a person, a spouse or a loved one, a lot of times they left their jobs to take care of children or didn't enter the job space because they were taking care of children. So they come into perhaps caregiving later on in a more negative light as far as financial reserves because they don't have the time and the workspace to save for their retirement or for family needs. And so it becomes a more of a long-term domino effect on savings. There's a possible loss of insurance if that person will have to quit their jobs to stay home with the person they need to take care of. Medical insurance, life insurance and disability for the employee. There's a loss of savings program that I mentioned earlier, funding IRAs or 401ks leading to less income in retirement. And it could also increase your debt, especially credit card debt. A lot of people end up going through savings and they end up putting a lot of their medical needs or regular expenses on their credit cards. Getting a credit card debt, that's gonna affect your credit inability to possibly get loans or to do other things you need to do later. So there's usually a high stress position to be in because you're managing not only financial, you're managing your emotions, the emotions of the person you're taking care of, plus all the other things that come into play that seems that you're not aware of until you're in the middle of this situation. Next slide. So with all of this in the light of all of this of caregiver, who's gonna take care of the caregivers? They're suffering from, like I said, emotional, psychological, fear, anxiety, financial anxiety, all of this stress. And unfortunately caregivers do not take care of themselves. They're putting everybody else in front of them. And then why is it coming more and more difficult to find care? Yes, you like to spend some time away, do grocery shopping, do some things you have to do, but it's very difficult to find someone to come in to take care of you. And the cost is usually very exorbitant. So the shift to community care is one of the reasons, settings rather than a traditional residential settings. And on top of that, a lot of those settings are very expensive. In the state of Kentucky, the average cost of caregiving, if you're going to go into a care assisted living or nursing home, that could be $57,000 a year. How many people have that kind of money sitting aside? And the average time spent in a setting like that is five to seven years. That is a lot of money. So one in five caregivers report high financial strain as a result of caregiving. That's 18% of the people who are caregiving. Four and 10 have experienced in their caregiving at least one financial impact, losing a job, losing savings. And this is as a result of caregiving. Three and 10 have had to stop saving as a result of caregiving, that's 28%. If they're stopping saving, how is that going to affect them and their families going forward? One in four have taken on more debt as a result of caregiving, that's 23%. So if they're taking on more debt, they're saving less, they're not making the income because they're saving home. You can see how the financial stress just compounds one on top of the other. Next slide. So the erosion of caregiver savings. 22% of caregivers have used up savings and 12% used up long-term savings as a result, such as going through their IRAs and borrowing out their 401ks. That alone causes some additional costs because if you're not retirement age, borrowing out of IRAs or 401ks becomes another tax burden. And you may have penalties associated with that. So you have to pay a 10% penalty to take it out and then you have to pay taxes on everything you've taken out. So that again, exacerbates your savings, the lack of income, everything else. So taking those things out will be eroding your years of potential financial gains. Additionally, possibly incurring stiff penalties and additional tax liabilities. Two and 10 have left bills unpaid or paid them late, again, affecting your credit. 19% report that hurting their credit. 15% borrowed money from family or friends. And you know this is not something that could be done all the time. And it's not so it's not sustainable. One and 10 have been unable to afford basic living expenses like food. This burden has become more dire as a result of the recent inflation. Unfortunately, this financial burden is more prevalent in poor communities and people of color. Unfortunately, because their economic stress, they may have already encountered, this becomes even more exacerbated. Next slide. Again, who will take care of the caregivers? What is their impact on their jobs or professions? If you're out for a period of time, a lot of times you've lost the skills, you may not kept up with some of the skills that are needed to stay in your profession. So they may have to go back to school. So there's a whole lot involved in that. According to a report at six and 10, caregivers continue to work while caregiving at 16%. That is huge. The majority, 61% of those people have also experienced at least one work-related impact, such as going in late, missing days, leaving early, or taking time off to support, receive the care, 53%. Can you imagine the stress on that, having to leave early to take someone to doctors, doctors, and business persons in the hospital, taking time off for that? You know, then you're the fear of losing a job that comes into play. A lot of people retire early to be a caregiver, leaves the financial strains high, again, leaving your job early. You don't know how long this caregiving is gonna go as well. Next slide. So caregiver concerns, if you're a caregiver, you have a lot of them. You could probably get out a notebook and fill it. The impact of disease and illness, especially a long-term illness, can ripple beyond the caregiver and the recipient. Sometimes other members of the family or community may be called on to carry out tasks. And I encourage you, if you can find family or friends or neighbors that can do some of those tasks and free you up a little bit, it's well worth it. According to the AARP report, up to half of caregivers rely on others for help, that's 53%. Those can, these can include children in the home and it's unpaid help. 14% of caregivers who rely on additional help say the help comes from children under the age of 18. Can you imagine the burden, the financial burden on the families as well as the emotional burden on children, especially in the last two years when there's a lot of emotional strain on children being out of school as a result of COVID? There is so much strain out there. There's such a need for additional caregiving and additional resources for caregivers. Next slide. Many report these caregivers had a lot of their time was spent on managing medical bills and insurance. Where can they get help? There are organizations that can help. And if you're dealing with questioning medical bills, again, on one of our financial page, we have Co-Patient. It's an excellent organization that helps with medical bills making sure they're right and then fighting in your behalf to get those things reduced or taken care of. Take out nonprofit organizations that can help assist with medical bills as well, especially when appeals need to be done. They are timely, there's a time on those appeals and you have to make sure they're done correctly. Determine if more telehealth appointments are available. That prevents you from having to go out of the house, prevents, saves you on gas, saves you on time. And especially if it's not something related to having to get labs or things like that. Telehealth appointments are huge, they're not going away. They became very popular doing co-patients and they're very popular doing COVID and they're not gonna be going away. Review your insurance to determine if any services are available. There are some insurance plans that can help pay for some care, look at it. If you have long-term care insurance, you may have, you forgot about, may have been through your job or through an organization. Look at, see what they offer. And sometimes it's not just for that person, it may be for partners or spouses where they can share this long-term care expenses. If skilled nursing is needed, long-term care insurance can be used in the home as well as in skilled facilities. Review the policy for all of the benefits. Next slide. Respite care, this is an area that a lot of people forget that could be available to them. Respite care provides short-term relief for primary caregivers. It can be arranged for just an afternoon or for several days or weeks. It's a service that can be provided at home or in adult daycare center. I don't know, adult day center. This service is very underused. 38% of caregivers say it would be very helpful that only 14% of caregivers use this service. There's things like Angel Care, if you haven't heard Angel Care, it's a wonderful, wonderful service. Look into these things, you might be able to find it, sometimes your Medicare, Medicaid, or state or federal programs may help you take care of your family. Technology could help caregivers through only 50, though only 53% report using technology. These tools can help with caring for recipients' finances. Many report that technology is too complicated to use. If you call your local library, there is a lot of resources and classes they give to help you use technology, whether it's tele-help, whether it's getting online, setting up some kind of budgeting or helping you navigate through insurance or bills and things online. There are a lot of resources out there and there's people who will be willing to help. Call your local library, they'll be able to direct you to resources. Next slide. So access to respite care. Services are charged by the hour or by number of days or weeks that services are provided. And the prices can change depending on where you live. Most insurance plans do not cover these costs. There are some that do. Medicare will cover most of the costs of up to five days in a row of respite care in a hospital or skilled nursing facility for hospice care. Now, if you're in a hospital, you're in a hospital and they recommend you had to go for rehabilitation in a skilled facility, a lot of times your Medicare will pick up a lot of the costs for that. Medicaid may also offer assistance. And remember, Medicaid can be different depending on what state. Some states have additional resources for Medicaid recipients. Call your state and federal resources to find out what's available to you. You might be surprised at what's available. You must pay all costs of the things that are not covered through your insurance. Next slide. So don't forget FMLA. So FMLA is also underused. FMLA can be used by working spouses to help care for spouses at home. Up to 12 weeks, 10 states offer paid time off, which is California, Colorado, Connecticut, Massachusetts, Maryland, New Jersey, New York, Oregon, Rhode Island, and Washington and the District of Columbia. So these all actually offer paid time off. FMLA, the traditional FMLA does not pay for that. It's just 12 hours a week. Remember, this could be broken down. It doesn't have to be done all at one time. It can be broken down in days over a period of time. So while FMLA guarantees the employee unpaid leave of 12 weeks over a 12-month period, the paid family leave provides up to six weeks of paid leave in a 12-month period. Paid family leave does not guarantee a leave. It's based on what your employer offers you. Also, it does not guarantee your job. You may come back at a different job, but also remember, FMLA, a lot of jobs require you to be there for 12 months or 1,250 hours put in before you can actually put in for FMLA. Check your benefit program for your job. You can opt into home and community-based service programs. Look into those. There are a lot of great programs out there that are locally based. Determine if your loved one is eligible for veterans' aids. There are a lot of resources available for veterans that you would not normally have. So please call and find out about those, and some of those are paid. Determine if your family is willing to pay you for your caregiving time. Case in point, my mother lived in South Carolina, eight children. We lived all over the country, and we used to provide support with all kinds of things. We picked up all of our bills or mortgage. We had a couple of my family members, my two sisters that lived close, would spend time taking care of my mother, and we would pick up a lot of the costs for that. So there's things that could be done to help take care of that person you need to take care of. Next slide. So how do you become a paid caregiver? I hear this quite often. You need to determine your eligibility for Medicaid Self-Directed Service Program. States have several options for providing Medicaid or ROLIs with the option to self-direct Medicaid services under the state plan and waiver programs. This is very important. I didn't even know about this until the last couple of years. When eroding one of these waiver programs or other self-directed options, program participants may use their allotted budget to hire and pay for caregivers. And you can use that budgeting over a period of time, whether it's one time a week, two times a week, whatever is allotted in there in that budget, you can hire somebody to take care of you. Again, you gotta be able to find out whether that spouse is eligible to be paid for under that Medicaid Service Program. To determine your family member's eligibility, again, for services, contact your local Medicaid office. They'll be able to tell you whether they can pay that spouse or a family member to take care of you versus someone coming in from a organization to help take care of your family member. Next slide. The programs to compensate family caregivers differ from state to state, and in some cases from county to county. So again, call your state, federal, county organizations, local organizations to find out what's available to you. Not all states make this option, and some states have restrictions on family members that may be hired as caregivers. To find out your state options, go to www.seniorlink.com. To find out your state options, go to www.seniorlink.com. This is a great link to get resources for you. You can find out about options that are available and things that may not be available for you so you can plan ahead of time. Cancer Care provides cancer-specific support groups for spouses or a partner with cancer. The group is led by an oncology social worker. Often members of the support group can lead you to resources as well. So that's Cancer Care. CancerCare.org is another organization to go through. Next slide. So reframing the narrative. I'm going to repeat this because it's so important. When you are caregiving or care partnering for a loved one, so many emotions surface. I experienced frustration at not feeling like I could do enough to support my husband. And unfortunately, that doesn't go away when that person is deceased. A lot of times you carry that guilt and that frustration with you. I had feelings of guilt, isolation, fear of unknown, and periods of depression. And if you can understand this and recognize it and get the help, it's going to help your health as well. When I realized that I could call up my friends to help and to talk to someone and realize that I didn't want to be anywhere, I realized at that point, I didn't want to be anywhere else. Getting that respite, getting that other voice, getting those other people to help me and realize that I wasn't alone. Someone just to come in and walk the dog or stand outside the door and talk to you for a few minutes really goes a long way in how you feel about caregiving. And it also, surprisingly, even though you might not be aware that person you're taking care of, they benefit as well. A lot of times they see the stress that you're in and they don't want to say anything because they feel like they're feeling guilt, isolation, depression themselves, and to feel like they're taking your time and that you're taking care of them. They feel guilt and frustration and desperation as well. So if you find someone to help, even some of the small chores like taking a dog for a walk, somebody watering the grass, taking care of your flowers, things like that, goes a long way in freeing your time up and allowing you to spend more quality time that person you're taking care of. I became a care partner instead of a caregiver. Consequently, my husband didn't feel as much like a helpless patient and his attitude changed as well. I felt less stress. I became more grateful for the experience and it led to more quality of time. Very important because you're not gonna get that time back. Next slide. In summary, I know this went kind of fast. I hope you have questions because I'd be glad to answer them from a personal perspective as well. Caregiving or care partnering is difficult as you all know. As our population ages, the need for caregiving resources are going to increase. More and more children will likely find themselves in caregiver positions and how is that gonna affect them if they are under age 18 prior to being ready to go to college? How is it gonna affect them in their studies? That's something that's really, really important. So I really stress you find other options as well to try to take care of your caregiver, especially if it's a chronic long-term illness, it's very difficult to expect children to be able to manage these for a long period of time without giving up on themselves. Seek out help and financial alternatives before this becomes a reality. Again, check local, state and federal resources that may be able to help. And don't forget to ask for some help from friends and family. They can help manage bills, make calls, pick up medications, walk a dog, pick up groceries or make a meal. Keep an eye out or sit with the recipient while you attend your own needs. Look for alternative and creative ways to get paid for your services. And another thing that I found was very helpful. Instead of being in a house where you're taking care of that person, in my case it was my spouse, and it's quiet, you're walking from room to room, instead of just having that television on, sometimes it helps to have uplifting music. I found this very relieving. I found myself being able to sing along and it really lifts your spirit, and it lifts the spirit of that person you're taking care of as well. So I would love to field some questions. If there's anything that I can do to help, any resources I can do to help define for you, please let me know. We have any questions? Sorry, I wouldn't let me turn on my camera. No questions yet. Ironically, while you're talking, I got a call from the hospital to make a major decision for my grandma who's in the hospital right now. So pertinent topic and never leaves you. I think that's something that's important to recognize is when you're caregiving, it doesn't matter where you are, it always stays with you. One thing that I had a question with when it came to the FMLA, do you have to be legally married to the person or prove bloodline? Is that correct in order to get that FMLA? I know when it comes to marriage, you have to be legally married. With we are the child, do you have to give a birth certificate? How does that work? Differ is depending on what the employer asks. And it depends on state to state. But generally for FMLA, a spouse can or a domestic partner and a lot of respects can as well. Again, I would check with the employer. There are a lot of employers who are recognizing domestic partners. If you are a child of like an adult child taking care of a parent, some employers give leeway to help with that. And again, I would always look at this as a case by case basis. Talk to your employer. If your employer knows what the situation is, especially if it's a chronic long-term illness, and it could be a person could be fine one day or one week or one month or one year, and the next year they're sick again. If the employer knows that, especially your boss, and you are a good employee and you volunteer maybe to work extra hours during the week or if there's any additional things that come up, that you want to participate in knowing that you may have to ask for a favor later on down the road, it's well worth it. Additionally, employees can ask if there's any, what they call a bucket, a pool where people have volunteer vacation days that they cannot roll over. Ask about those because a lot of times people put those in a pool and it can be used for people who need to take time off paid. Awesome, thank you. Another question here is a good one. How do you cope when the patient does not cooperate with the things you believe are medically beneficial for them? How do you cope with someone who wants to give up when you are not ready for that? I share that question. That is a very difficult one. I think what's really important is for, I think our country needs to get a, we need to talk more about life and what that means and quality of care. And it's unfortunate that everybody wants to live forever, but we know that's not gonna work. And there are some people who realize that if they get to a certain point, that they wanna die with dignity and they don't want all of these other things interjecting. And so anytime it comes to these things, it's very important to talk about these ahead of time. Before a person is on a lot of medication, who can't think rationally. They make sure they do their estate planning and they have those powers of attorneys, those durable power of attorneys, those living wills, all of those things in place, because eventually it may come down to that for all of us. It's very difficult when you have a difficult person. I would encourage you, when the person who asked the question says, when they thought was in that person's medically best interest, is that what the doctor is saying? Again, if you can get to support the doctor and that's what the doctor is saying, then see if there's a social worker. Sometimes a person's going through depression, could be short-term depression. My husband did that. And it's unfortunate a lot of men, and I say this because it's true, statistically proven, I don't wanna just, you know, you mean a man, but men have a tendency, and culturally, we have allowed this or forced this on men to realize that they feel that they can't ask for help. And even if they're financially or emotionally stressed. So that just hurts their health as well. So it's very important to recognize when a person's not themselves and recognize it could very well be a short period of time that they're going through this, and seek out help from the doctor. They have social workers that can call and help you with this, or somebody can talk to that person. And when you go to the doctor, mention this, maybe send a note ahead of time and say this is something we need to address when you go in. I understand it's difficult, it's very difficult. And one day the person could be on the top of the world, the next day they could be down. It's whenever a person's ill, and it's a long-term chronic or maybe a terminal illness, they're having to come to grips with mortality. And sometimes we as a lay person looking at this, we're coming to grips with mortality. Sometimes you may be breathing ahead time, and that's natural, but you're also looking at your own mortality and how you want things to happen with you. So there's a lot to unwrap with that. But I encourage you to talk to the doctor and talk to social workers who can help intercede on your behalf when it comes to the medical care and what's in the best interest of that person. Yeah. Outside of the social worker, what other kind of therapy do you recommend for caregivers? Support groups, there are support groups for caregivers. And support groups will give you a lot of resources that you probably wouldn't know. They could tell you about local people that they've worked with. Word of mouth is always really big, especially if you're gonna have somebody come into your home. If someone's used a person before, whether it's somebody through their church who volunteers to do this for people, word of mouth is wonderful because you already know how that person cares for people. They'd experience it themselves. I think caregivers have a tendency also to, like I said before, to put their own needs aside, and they may need some help as well emotionally. And right now there's great resources online where you don't have to go into to talk to a doctor, where you can sign up your insurance. They'll take your insurance online, and you can talk to a doctor or a social worker or psychologist, someone to help you along the way online. And your insurance would generally pay for all of those. Would you ever recommend grief counseling for somebody that's an active caregiver, kind of grieving the almost the life that they thought they'd had, you do know what I'm trying to say. For the caregiver or the recipient? Both, probably. You know. I know you're not a mental expert, but just from your own experience and from what you've seen. What I was going through, I wished that I had sought out help when it became very difficult. I didn't, of course you shoulder, as a caregiver spouse, a lot of times you shoulder everything, and you don't want to put that responsibility on anybody else because you know that person better than anybody. But I think counseling goes a long way, not only for the caregiver, for the recipient as well, because it helps the recipient put things in perspective, opens up dialogue for both people, because a lot of people have a tendency not to talk about things that need to be talked about, planned for everything needs to be planned about, not just for that person, a recipient who's ill, but the entire family. So I encourage talking to a social worker, whether it's one or two visits, it doesn't matter, but at least reach out and find out that there is help out there, and again, it can be done online. You don't have to go out to someone to have that done. Yeah, yeah. I encourage, it's gonna help you put a lot of things in perspective. I agree. Okay, another question, this kind of goes right along with what you were saying about some people struggle to talk about things that need to be discussed. How best can you bring up the need to get our finances in order to include a will without your loved one being upset? If this person brings it up to their loved one that they don't believe is going to survive for very long. In this case, it's the husband very much in control of finances and does an excellent job, but when he's gone, the person that remains has no idea how to handle any of the finances. They do have power of attorney and a living will and order, but I think this is an excellent question and excellent example of things that are really hard to talk about. And even as a financial program advisor, what do you kind of say to couples that are in this situation? Wow. Yeah. It's a very difficult one. And I wanna share my experience. My husband was very, very hands-on with a lot of things. I mean, I did it a lot and then finally I said, I just didn't wanna do all this stuff. And I started, we farmed out what we wanna take care of. And my husband was one who three months before he passed, he was down in our gym, we had a gym at home. He said, I'm gonna get back in shape. And there's a lot that goes on. There's a lot of not facing reality. There's a lot of that for everybody. And again, our culture and our country is we don't talk about death. We don't talk about illness. We don't talk about what ifs and what needs to be done for families. There are organizations that actually help with bringing these topics up. There's actually called, I know this sounds horrible, but there's called death dinners. And they're becoming very popular where people will, families will come together. They bring a potluck, they sit down and eat and they talk about how they wanna plan for their family members, for themselves and for their family members. What I found to be helpful and other people have as well is when you have this topic and you need to bring these things up, making sure the will and estate planning and budgeting and finances and everything is done. Believe me, that person who's ill is thinking about it. They don't wanna put another burden on you a lot of times. It's just to talk about it and they don't wanna make you afraid. And unfortunately, a lot of men in the 60 or 70 age category were taking care of all the finances. And that's just the way it was done because a lot of times they're the ones who were working, the women weren't in the field working. And so a lot of men manage all the finances. It becomes very difficult to get them to say, we need to do this, we need to do that and to allow his wife to become involved in knowing how to take care of things. So they'll know how to take care of things prior to a person passing. If you can get family members like children on board or sometimes the wife or the husband can say, I'm thinking about what I need to do if something were to happen to me. I'm taking care of you. But what if something happens to me? I'm looking at everything we have to make sure that if something happens to me, you're still gonna get the care you need. Sometimes if you talk about your own needs and what you wanna do, a lot of times that'll bring the conversation up. I found out most helpful or bringing in a daughter or a son and just having to get together and say, we need to talk about this. We need to talk about this and have them say, this is what we're doing for our children. Our children may be young, but we're already planning for what ifs. Right, and I love the framing of that too, because I think lots of the fear comes from, I'm gonna be here, I'm gonna be here. Don't worry about me not being here. It doesn't even have to be, I need to figure this out in case you're not here. It can be, in the rare case that something were to happen to either you or I, I wanna make sure that everything's in order. It takes less pressure off of them and more cohesive sharing of responsibilities. Right. Which way easier said than done. Way easier said than done. And it doesn't have to be, look at a thing where somebody's gonna die. It'd be in the event I became disabled. How are we gonna take care of that? If I'm in a hospital or I'm in a car accident and I can't make arrangements for myself, I can't, we need to get these things settled ahead of time. So there won't be, there'll be less stress on you. I'm telling you, it makes a huge difference. My husband, and I didn't realize, I mean, we knew before we got married, how we wanted to be, if something were to happen to us, one person became ill. And you need to make sure when you're doing this, that when you do estate planning, that the person who's gonna manage a lot of things like the decisions in the hospital, the care, that they're actually gonna follow through with it. And it's the most difficult thing to do. But I knew what my husband wanted. But when you signed that DNR and you know that that's it, it's like an out of body experience. But you know that you're following with your loved one's wishes. Wishes. And that does help, just to know that you're doing, because I would want somebody to follow what I wanted. Yeah. And again, planning makes all the difference in the world. The last three weeks before my husband passed, you can tell that there was something coming, right? We knew something was coming. Even though he was up walking around doing his own thing, we knew that somehow something was coming. And I wanted to talk about it, but I didn't wanna talk about it. But one night, we were getting ready for bed and he sat on the chair in the bedroom and he sang the song to be John Legend's song. My head's underwater, but I'm still, you know that song he did for his wife? My head's underwater, but I'm still. He sang that for me for two hours straight. And it was almost like he was trying to make it a point. And I realized that we need to wrap some things up because he's making a point of something. Sometimes you take clues or sometimes there's clues and you can't pass up on those clues. And the conversation is difficult for everybody. I need to make planning for myself. I'm a financial advisor. There's still some things I need to change and correct and we should not put these things off. It's important, though, less stress later on. Less guilt, less stress later on. Yeah. Steve mentioned it's better to, from his experience, it's better to allow friends and family members to help find a way in which they're comfortable, nothing worse than forcing someone to help in a way that they resent. Right, resent. Everything is shut down. Yeah. Absolutely right. And then Nancy wondered, is negative mortgage a way to manage financial stress and what would be the alternative? So she must be talking about a reverse mortgage. It's probably a reverse mortgage. If you're in a home and you have equity in it or you may have had the house paid off, one thing to look at, which you gotta be careful, if you have a surviving spouse, if you go down and spend that house down, that spouse has a leave, right? That could be a possibility. Again, I would talk to a financial advisor with that. I mean, I can't just say for any, I would talk to a financial advisor. That's a huge one. You gotta look at taxes. You gotta look at surviving spouse. You gotta look at, if you think they'll do a spend down, Medicaid. I mean, there's a lot wrapped up in that question. Another question I had, when it comes to palliative care or even hospice, what's the caregiver's role when it comes to those kinds of things where there's care, professional care from a hospital in the house, where do you see responsibilities from that care partner coming into play? It's really interesting because when hospice comes in, they're not there for the entire day. So that caregiver is still taking care of that person for the majority of the day. So that doesn't change. The hospice is there to make that person comfortable. In times that needs medication or to counsel family members on what's going on, but they're not sitting there watching things, helping from day to day. So that caregiving is still in place. Palliative care is very much the same way. A lot of people think that palliative care is like hospice. Palliative care isn't. Palliative care could be a person who's been there who's had a lot of surgery, major surgery, and it's gonna take them a lot to get on their feet. And they make them comfortable. They help with a rehabilitation that's completely different from hospice care. Hospice care is when a person has decided they're not gonna do anything to prolong life and chemotherapy, unless it's to make them comfortable. They're not gonna do anything other than that to make them comfortable. And there's a period of time when they know that person's not gonna live. Palliative care could be just a short period of time to get the person on their feet. It doesn't mean that death is imminent at all. So if there's caregiving, that's gonna be still your person, you're gonna be the one doing the caregiving. Right, yeah. They're not gonna be there all day taking care of a lot of patients. Exactly, unless you pay for someone or found help coming in to help care for that person. And again, some insurances will pay for that. Look at Medicare. It's not gonna be the person who's coming from a hospital into a situation like that. A lot of time that care goes on for a period of time. Interesting. All right, well, those were all of the questions. I think that was an excellent presentation, excellent discussion. I'm really grateful for all the questions that were asked today. I'm gonna finish up with just a couple of our outro announcements and then we can finish today. But thank you, Diana, for your education and also for your personal experiences that you've shared with us today. I really do appreciate it. You can join us next month on August 9th. Normally we meet the first Tuesday. This will be the second Tuesday of the month. And we're gonna be hearing from Diana about how to capitalize life insurance to pay for your care. I used to think that life insurance was just something that happened after somebody had passed, that that money was accessible, but we're gonna be learning how to use it as a resource next month. You might be interested in other Myeloma community events. We have upcoming. On the sixth is our health tomorrow night, is our health tree moves for Myeloma chapter. We're gonna be discussing how to find mental strength through physical activity. And then the 12th at 7.30 PM, that's actually 6.30 PM Pacific. I'll make sure to change that before we send these out. But the 12th at 6.30 PM Pacific, excuse me, is our SoCal Myeloma community chapter. We're gonna be talking about how to live with Myeloma while not dying from something else, making sure that we have a cohesive care team that's looking outside of our Myeloma to other parts of our body so that we don't neglect our health in other areas. And then Thursday, July 14th at 1 PM Eastern, is our stem cell transplant chapter. We're gonna be discussing what diet we should follow after stem cell transplant. The link to sign up for any of those events and even more events I did not mention today is found at the bottom of the slide and will be included in that follow-up email with the resources within 48 hours of the event's conclusion. Another thank you to our sponsors, Without Me This Is Not Possible, Bristol Meyer Squibb, GSK, Genentech, Janssen Oncology, and Atme. And a big thank you again to each of you, to you Diana, for our audience today for an excellent discussion. We hope that you have a great rest of your day and thank you for joining us. Take care, everyone.