Welcome to CareAware Video #2—Ducks in a Row

Introduction

Scott: I think the advice I would give caregivers as they start this is to stay organized, and if you are not an organized person, find somebody to help you get organized.

Lewis: When you’re a caregiver, it is so important to first collect information, to know exactly what is out there and I’m not just talking financial information, that’s very important. So know what you have in terms of bank accounts and where the finances are, what needs management. But also, find out about property titling. Are bills being paid on time? These are some of the first important things you can do as a caregiver.

Saxman: If you don’t have arrangements, it can get really bad. It can be really bad because things can happen to you that maybe you don’t want done. Your family can’t make decisions because they’re not sure how you felt about things, and it’s almost an extra burden on them.

Harden: Having end-of-life conversations with your loved one is one of the most challenging things to do… But it’s important because it allows you to be proactive rather than reactive. So when a crisis does happen, things are pretty much in order.

Moyo: One of the conversations that is important to have is that conversation about the important documents…

So that it’s not a situation where we’re rushing and it’s, “Okay, now it’s crunch time. Mom and Dad are in the hospital, my spouse is in the hospital, and I need to find their insurance card.” Or, “I need to find what their final wishes are in terms of end-of-life care.” So it’s important to have those documents, one, in a safe place. But also in a place where a lot of people that are involved in the care or a part of that care team know where they are, so that in times of crisis we’re not running around trying to piece things together.

Austrom: “Ducks in a row” –It’s a metaphor for getting yourself organized.

Austrom: Hi, I’m Dr. Mary Austrom, the Westly P. Martin professor of Alzheimers 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. 

Austrom: For caregivers, getting your ducks in a row means knowing and assembling the key documents you need to have in place, this way you’re prepared and can quickly access these documents should an emergency or any special need arise.

Bell: In this video, we’ll discuss how to assemble and share key documents to reduce stress and improve communication between family members, medical staff, and other supports. We’ll also take a look at essential insurance, legal and healthcare documents.

Bell: Welcome to CareAware.

Organization and Document Storage

Dennis: The best skill that I see my caregivers have that other caregivers should consider is organization. So as much as they can get their parents’ lives in order ahead of time, it’s going to make their lives that much simpler because they can focus more of their time on analyzing and making decisions on Mom and Dad, and assisting them and caring for them, and not on finding a birth certificate that the attorney needs and having to track down some county recorder’s office or health department in some crazy state that Mom or Dad were born in. That’s kind of the biggest one.

Lewis: I cannot stress how important it is to share information, or at least, where that information is located when we’re doing our planning…

Even in estate work sometimes, people will come in to me after we’ve closed an estate and they get some tax paperwork the following year and go, “Oh, my gosh. There was a CD. I didn’t know anything about this.” So it is critical that we share that basic information with our family. My clients are fiercely private, as many people of the older generations are, and it’s okay to be private. But at least identify where key information is. Who are your key financial people? Who are your key advisors, your CPA, your attorney? Where are your key documents located? At least do that.

Harden: A great tip for organizing your key documents is to get a three-binder, five-binder notebook, and then get some plastic inserts. Then, put all your key documents such as your deeds to your house, your birth certificate, your wedding certificate, your banking documents, your military documents. Any important documents that you can think of should be in this binder. So therefore, when a crisis does come, you know where they are and you just have to make a copy of them.

Dennis: Just make sure to keep them in a safe place in the home. I wouldn’t recommend a safety deposit box or anything like that at a bank. Because then, you have the chicken and the egg problem of, “My daughter needs the power of attorney,” but then the bank says, “Well, we need the power of attorney.” But the power of attorney is in the box so you can’t get access to it without it. So most of the time, I hold onto the originals, and I think a lot of other attorneys, that’s pretty standard practice, and then the client can maintain a copy.

Moyo: One of the, sort of, most popular ways is like through the cloud sharing sources… So Google Docs, things like that where people can sign up through their own emails and passwords, that way everybody can share and has access to kind of the same information.

Duncans: Katy: Google Calendar. I’ve shared our Google Calendar with our nurses so they are prepared for the day, so they can see what their piece may have or his school schedule.

Duncans: Like some of his appointments are early in the morning….

Duncans: Just so from the moment they walk in they know that, “Okay, we’ve got to get things moving, get out the door to go get to a doctor’s appointment,” …

Duncans: Yeah, those communication strategies are really important.

Bell: An important part of planning is knowing what services are covered by public programs such as Medicare and Medicaid and what services may require private funding or long term care insurance.

Austrom: If you’re confused about what Medicare or Medicaid programs your loved one qualifies for, a great place to start is by calling call the Area Agency on Aging in your county and asking to speak to a SHIP counselor.

Medicare- Medicaid – Long Term Care Insurance

Lewis: The cost of care today, long-term care in particular, care in a nursing home, or care at home or in assisted living, is really catastrophic. It is so high that most people, unless they have excellent long-term care insurance, cannot afford the cost of their care.

Lewis: If you have long-term care insurance, and I’m a great advocate of long-term care insurance, it sometimes gives you those options to get care in the home or in a facility where you would not have been able to private pay for those things by yourself.

Lewis:  So with Medicare, the most common question is, “Will it pay for my long-term care? What will it pay if I need to go into the hospital, need to subsequently go into a long-term care facility? Or, will it pay for home care?” Well, let me tell you. Medicare was never meant to be a program that would pay for long-term care.

Lewis: It is there for short bursts of stay in a healthcare facility. You’ll often be told that Medicare will pay for up to 100 days in a long-term care facility. But I want to stress, up to 100 days. You have to meet the definition of skilled care. If you do not meet that definition, then you will not have your care covered under the Medicare program. Medicare does not pay for custodial care, which can be long-term care in a nursing home, not just care in assisted living, for example.

Lewis: Medicaid is a wonderful program. It is by far, the largest payor of long-term care in our country and in the state of Indiana.

Lewis: However, I want to stress that it is important to get good advice if you have assets, so that you don’t necessarily have to lose everything, to become impoverished in order to take advantage of the Medicaid program. For example, you have a spouse at home and you’re very ill. You know that long-term care is inevitable for you. Do planning. Go see an elder law attorney because that will make all the difference in the world. We have very, very generous laws in terms of preventing spousal impoverishment. If you get good counseling, you don’t have to lose all of the assets you have built up.

Lewis: There are a lot of provisions also in Medicaid law for taking care of minor children and disabled family members, disabled children in particular. Again, seek counseling because often, people come to me and have spent all their funds and they’re saying, “Now what?” I wish I had been able to get to them a few years before that.

Dennis:  So the thing that most people need to know about Medicaid is just that there are some pretty stringent criteria to qualify. The case workers, oftentimes, aren’t going to go out of their way to help. So, really be proactive when you’re trying to send that information in. But it can help pay for nursing home care, in-home services, and assisted living.

Stone: It is very overwhelming I think, and there’s so much misinformation about Medicare, and especially Medicaid and Medicaid waivers. I know my son qualified for Medicaid disability and I never thought he would. We were middle-class, educated folks, but you’d be surprised. There are some programs. There may be waiting lists and there may be other requirements. You may have to shift things around. But it’s definitely worth at least getting some advice and finding out, talking to these trusted entities that have access to the resource information, because it’s too much to do on your own, really.

Wills and Trusts

Bell: Legal documents are extremely important for caregivers, and different types of legal documents determine how your loved ones affairs will be handled.

Bell: Some of the names sound alike, and some of the rules and forms will vary by state, so it is best to consult an attorney to make sure you have everything in order.

Harden: The key documents that I make sure my clients have and I recommend, if they don’t have anything else, they need to start with a will, no matter how much or how little they have. They need to start with a durable power of attorney, which is over their finances, and they need to have a healthcare power of attorney, which is also called a healthcare declaration.

Pierce: The safety and well-being and nurturing of a child is first and foremost. So oftentimes, one of those first legal supports that we’ll provide for a grandparent is making sure they’ve got a will that provides the clarity for what should happen to the children that they are now raising the second time around as a parent, if something happens to them. What we see, oftentimes, is that grandparent reaching out to their extended family and saying, “Will you have my back if something happens to me? I’m committed to these children, but I want to know that there’s a long-term plan for them.”

Pierce: That’s the one thing that we really work to support caregivers on. And I think provides them with a great piece of mind.

Dennis: For families who have adult or minor children with disabilities, the biggest thing they can do is plan ahead by considering, “If I leave my son or daughter this money, how is that going to affect their benefits that they receive, whether it’s Medicaid or SSI?” So the best thing that folks can do is set up a special needs trust for that child. So normally, I’m not saying everybody needs to go out and get a trust, but the facts of that person’s case would definitely warrant setting up that kind of trust.

Dennis: A special needs trust is just a kind of trust that can hold onto money that a child receives from a mom or dad. The trustee can pay for the expenses of that disabled child without affecting their public benefits. If it’s done correctly, when that child’s gone, it can also go down the family bloodline to the next generation… Because it has never touched the hands of that disabled child, so the state isn’t going to look to be paid back for that child’s benefits.

Legal Documents

Lewis: The power of attorney, I think is probably the single most important instrument for a caregiver to ensure that is in place.

Lewis: A power of attorney is a document in which you are giving the individual that you have appointed the ability to stand in your shoes and make decisions for you.

Harden: The differences between the various powers of attorney, there is what is called a limited power of attorney. A limited power of attorney is when you give someone limited powers, just like it says, to only do certain things. For example, I may give someone a power of attorney to sit at the closing of my house because I’m out of town. That is the only authority they have, so it says specific things that they can do.

Harden: A durable power of attorney is a power of attorney that pretty much covers a lot of different things. You can do real estate transactions if you list it, banking, things of that nature. It lasts until it’s revoked or until the person dies, whichever comes first. Then, you just have a general power of attorney, which can be like a durable power of attorney. Sometimes, they’re used interchangeably.

Lewis: A power of attorney is durable in Indiana. All powers of attorney are durable, unless you make them otherwise. What durable means is that it endures through your incapacity.

Lewis: A power of attorney ends at death. However, you can conduct business on behalf of a deceased person by way of being a trustee in the person’s revocable trust, or by way of being a personal representative, where you’re named that under the person’s last will and testament. Those documents give a person the ability to manage the decedent’s estates after death.

Lewis: We also have healthcare powers of attorney. We have, through the Power of Attorney Act, the ability to appoint someone to make healthcare decisions for us. The Indiana Healthcare Consent Act also gives us the ability to appoint a proxy to make decisions for us. Again, both very important items to have in your planning toolbox.

Caine: So I think one of those things that is always important before a loved one gets ill is that you can be in an auto accident or a life-threatening illness, you might have a stroke or heart attack, or whatever, and you really need to have identified prior to that event someone who has the power of attorney to help make those critical health decisions if you don’t have the ability to be able to speak for yourself. Those need to be done for everyone.

Caine: you may have multiple members in the family that they all disagree about what should happen for Mom. So those kind of decisions need to be made in advance, and maybe one person is designated to help make those decisions.

Guardianship

Lewis: A guardianship is a court process. A court is appointing a guardian, a suitable guardian in the court’s opinion, to manage the individual’s person and estate. By person, I mean making healthcare decisions, the ability to choose where that individual lives, to be able to place a person in a facility if that is appropriate. Those are all decisions that could be made under a guardianship.

Harden: A good example of when a guardianship may be necessary is, say, if that parent did not have a power of attorney in place and they go in the hospital. They have a stroke, they’re unconscious, and the doctors and the nurses need to know what to do. Well, there’s no one that they’ve given a healthcare power of attorney, a durable power of attorney. So it puts that child in a position where they have to go to court and get a guardianship over it.

Harden: Or say, for example, if there is a power of attorney in place, but the parent now has Alzheimer’s and you put that parent, to protect themselves, in a facility, but that parent keeps saying, “I’m going to leave.” There’s nothing to prevent that facility from letting that person go… So it may be necessary for the child to go to court to get a guardianship, which strips that parent or that loved one of their legal rights and makes them incapacitated, so you can keep them in the facility if it’s in their best interest.

Lewis: If you have done very good planning documents, such as power of attorney and appointment of a healthcare proxy, then you often can avoid the need for guardianship. Sadly, it is those people who don’t do good planning that often end up under guardianship.

Dennis: For families that don’t have loved ones, it gets to be a little bit more tough… I think there are a few organizations that are finally being established that they can help with a guardianship if that’s what’s needed, or at least trying to provide some guidance to these folks that don’t have anybody…places like Indiana Legal Services or Neighborhood Christian Legal Clinic, or CICOA for example, to at least get some people on their side so they can start assembling a team.

Limited Resources

Bell: What if you don’t have the resources to pay for an attorney?  Can you do it yourself?

Lewis: There are some documents that are very available and easy to download, such as the Indiana living will. I think if you google “Indiana living will”, you’re likely to get a pretty decent form.

Lewis: The other documents I think are so significant that it is a good idea to consult with an attorney knowledgeable in that area of the law.

Dennis: I would absolutely recommend that folks not try to do things on their own.

Dennis: For folks with limited resources, I would recommend if they called my office. I give a free consultation, so I think a lot of attorneys, if they call, they can at least get some information from a private, for-profit attorney. Otherwise, there are a number of nonprofits out there, Indiana Legal Services being one, that they can call to get some free legal advice, and then a free set of documents provided that they meet the qualification criteria.

Dennis: Going to Neighborhood Christian Legal Clinic or Indiana Legal Services, while it may be a little bit more work to submit the right documents to prove that you qualify and all of that, it’s going to be a godsend in the long run.

Advance Directives

Lewis: Advanced directives are much like they sound. They’re directions in advance of one’s incapacity. So you can have an advanced medical directive. For example, we’ve been talking about healthcare powers of attorney, an appointment of a healthcare representative.

Lewis: A living will is a document in which I am expressing my wishes should I become terminally ill or injured, and a doctor certifies, in writing, that I do not have very long to live. I can express certain choices about not wanting heroic measures to be used to extend my life. I can also express my wishes in terms of what happens if I’m unable to take food naturally, so I can make choices with regards to the delivery of artificial nutrition and hydration.

Lewis: The living will is a very narrow instrument. A DNR, it stands for “Do Not Resuscitate.” It goes to one single thing, “Do I want CPR if my heart stops? Do I want someone to administer CPR?” That is the essence of a DNR order. Usually, you are going to sign a DNR order, or you’re going to have choices available to you. You can opt not to sign that as well, if you go into a hospital, if you go into a hospice facility, or a long-term care facility.

Lewis: There are many important questions that come up in the dying process. At end-of-life, you have some decisions to make. Are you able to stay in your home?

Lewis: If that is not feasible, then would you prefer to be in a hospice facility, as opposed to a nursing home or a hospital at end-of-life. So those are a few of the discussions and questions you will need to address as you approach your end of life.

Lewis: If you don’t give thought to what you want to happen at end-of-life, sometimes those decisions are taken away from you. …If somebody is very sick and having a hard time breathing at home, they may call 9-1-1, you go to the hospital, the hospital admits you, and you may be there to stay. That may not have been the intervention you wanted. You may have preferred that somebody call a hospice provider, and have the nurse come out and attend to you and make sure that you’re comfortable in your own home.

Harden: My father said, “Harden, we’ve got to go get my funeral planning out of the way.” I didn’t want to do that but I’m so glad we did things like that in advance, and me as his caregiver, because when he did pass or when my mom passed, it was such an emotional experience. I didn’t have to worry about doing the whole thing. It was already done.

Harden: And so, it’s important so everybody’s not scrambling along when a crisis comes.

Harden: Also, you end up putting out more money when it’s like that. Because if someone does die and you haven’t had those end-of-life conversations, you pay more because there may be a little guilt, things of that nature. So if you can have it, it makes it so you can be proactive.

Lewis: I think when death is a difficult topic for your family that you do whatever it takes to initiate those conversations. It might be as simple as going to a movie which deals with the topic of dying, visiting a museum which would trigger some discussion about the death and dying process. If you’re up against a complete wall, then I think it’s also good to maybe talk to a therapist or a social worker who deals in these issues to try to get some tips on how to approach a family member with these difficult conversations.

POST

Austrom: Another important document, that you can talk to your physician about, is called the POST form.  The physician orders for scope of treatment. This will be especially helpful for caregivers to have and you can keep it with you and your wallet, your purse, the car, should your loved one ever be admitted to the emergency room, or the hospital, we encourage you to share that with the providers.

Lewis: It is a chronic problem in our society that we create these documents, but we don’t take them along with us every time we go to a doctor or facility. So if you are calling 9-1-1, and you don’t communicate that information to 9-1-1, or if you go into an emergency room and that information is not communicated to the emergency room personnel, they are going to act to revive you and do whatever it takes to intervene and help. That is their role.

Lewis: So, it’s a difficult problem how we communicate this information to the appropriate healthcare personnel. One of the things we are doing to address that chronic problem is POST. POST is Physicians Orders on Scope of Treatment, and it is a way to spread that information throughout the medical system so it is more available and we don’t run into the very problem, where you go into the ER and you get CPR even though you have a DNR order at home.

Lewis: POST is not an advanced directive. It’s not something you create. You are going to meet with your physician and together you will fill out the POST form. It’s a very simple two-page, back and front form, usually in bright, fluorescent pink. So it is something that you’re doing as a team with your doctor, and it is the doctor’s responsibility, not yours, to spread this information throughout the medical system, to see that is updated.

Boustani: We believe it’s very, very important for our team at the Sandra Eskenazi Center for Brain Care to work continuously with the family on making sure that the healthcare team understand their own preference for the future when they face a major healthcare problem. We do not specifically limit our scope on advanced care planning or our POST form.

Boustani: We, very specifically, work with them on a process. We, first, start building a relationship with them and a trust. Then my team, our care coordinator, spend a lot of time embedded with the patients and family to understand their preferences and help them explore these preferences.

Boustani: I don’t know what my preference right now. If no one come over and prompt me, and work with me on it, I won’t be able to explore it. So I need somebody to explore my preference over time and assure me that exploring my preference is dynamic, because I might have changed my plans.

Lewis: Family communication is key. I hate to see it when families break down over these issues. So, communicate, start early, start before an illness. We should all be doing documents when we turn 18, the legal age, and we should start making our wishes known and having some conversation with our family about our wants and desires.

Saxman: I had a gentleman once who was very happy that his dad had early onset Alzheimer’s disease and had been very clear with his family all along, “I don’t want a feeding tube. Don’t ever put a feeding tube into me.” Then, he started having swallowing problems, and they were really struggling with, “What’s this going to look like?” But they knew that he didn’t want that feeding tube, and it gave them great comfort that that’s what they didn’t do, that they abided by his wishes and really did it the way he wanted to do it.

Moyo: We also recently, through our advocacy work here in the state of Indiana, had passed our Care Act, which is the Care, Advise, Record, and Enable Act, which gives caregivers the opportunities, once their loved ones have been placed into a hospital that it lets the hospitals do three things. It allows the patient to designate a formal caregiver. So the family caregiver is notified that that individual has been discharged, and then it also allows family caregivers to be educated on any aftercare that needs to be provided.

Next Video

Bell: As you can see, understanding legal, financial and healthcare documents and organizing them in one place is essential for anyone who wants to make sure their wishes are carried out and their loved ones are provided for.

Austrom: In the next video, we’ll examine how the emotions of caregiving can be destructive if you don’t have a plan for how to recognize them and deal with them. Please join us in our next session of CareAware.

• How many species of ducks can you name?
• What’s your favorite thing to do in the summer?
• Name something on your bucket list.

• Have you had any difficulty with end-of-life discussions with your loved ones?
• Do you have any suggestions for organizing or sharing key documents?
• What challenges do you face with this subject?
• What point in the video was helpful to you?
• Review the Caregiver Weekly Check Up