[Carrie Meyers, Resource Specialist, Aging and Disability Resource Center, Northwest Wisconsin]

Today at our fourth annual Final Affairs Conference, we have Angie Joy and Barb Engelhart, Information and Assistance Specialists for the Aging and Disability Resource Center of Northwest Wisconsin.

And today, they’re here to talk to us about long-term care planning. So, please welcome Angie Joy and Barb Engelhart.

[applause]

[Angie Joy, Information and Assistance Specialist, Aging and Disability Resource Center, Northwest Wisconsin]

Good afternoon.

[audience members]

Good afternoon.

[Angie Joy]

It’s good to see you all. I hope you had a good lunch.

So, my name is Angie Joy, and this is my coworker Barb Engelhart. We are Information and Assistance Specialists with the Aging and Disability Resource Center.

The A.D.R.C. is an agency that serves Polk, Burnett, and the St. Croix Chippewa Tribe.

Thank you.

We are – we have offices located in Siren and Balsam Lake.

Barb is in the Siren office; I am in the Balsam Lake office.

We have a third coworker as well that is in the Balsam Lake office with me.

The A.D.R.C. was an agency that was developed in 2009. The state of Wisconsin reformed its long-term care system, and the A.D.R.C. was developed to be an impartial one-stop shop for information about anything to do with aging or disabilities.

[Barb Engelhart, Assistance Specialist, Aging and Disability Resource Center, Northwest Wisconsin]

An interesting note, between the two of us, we have 55 years of experience working in long-term care. We started when we were 12.

[Angie Joy]

And Im only – we’re only 29 now, so.

[laughter]

[Angie Joy]

What does long-term care mean? Long-term care is any ongoing support or service that helps with personal and or healthcare needs.

Today, we’re gonna specifically discuss getting your affairs in order, care and services, financing long-term care, aging at home, when aging at home is not an option, and thinking about end-of-life.

[Barb Engelhart]

So, where do we get started? Planning for long-term care starts by recognizing the changes that aging may bring. For instance, our hearing, our vision, our strength, our balance, and our energy. Things that can complicate aging can be chronic conditions, such as diabetes, where you’re going to have complications, or it may be what you genetically inherited. I have a mother or had a mother who had macular degeneration. It is likely that I may lose my vision in the years to come. So just a little bit, a lot of things we cannot control, and genetics certainly is one of them.

[Angie Joy]

After we’ve recognized that changes will happen, we need to think about it, talk about it, and plan for it. It’s important to plan ahead because this will help reduce stress in a crisis situation. So, we always encourage, start the conversation earlier rather than later so that you’re not forced in a crisis to make quick decisions.

We suggest that you talk with your healthcare provider about your health or the health of your loved one. Ask what you can expect over time, what you can expect if you have a chronic condition, what you can expect with the normal aging process. If you have some specific chronic conditions, you might want to bring a loved one with you because two sets of ears are better than one. We also suggest that if there’s a lot of information shared at a doctor’s appointment; you ask for something in writing from the doctor.

[Barb Engelhart]

Also, I think very important in this age of healthcare privacy, that if you are going with a loved one or your spouse or your parent, that you have them sign a H.I.P.A.A. release or they will not be able to communicate with you if you have a concern or a question.

So, starting the conversation. This is sometimes a difficult thing to do, but we start that conversation with a – a parent, a spouse, or children. A lot of times adult children have a really hard time recognizing that their parents are aging. Don’t want to hear about it, don’t want to talk about it, kind of in denial. But there’s a lot to talk about. Your personal preference. A lot of us don’t agree on each others – what each other’s decisions are, but it’s important to me, it’s important to you to have what you want.

We’ll talk about finances, health, and future planning. And getting that conversation started, maybe something as easy, like: You know, I’d like to talk to you about what’s gonna happen in the future to me. Asking someone if they have that living will or an advance directive or the power of attorney for healthcare. A time to talk to someone also might be at a time you are making a transition. Maybe from home to a condo or a senior living apartment. Those are the times you really want to have that conversation, but it’s never too early.

[Angie Joy]

It’s important to listen to and respect one another’s ideas. Independence is vital, and so family or friends may have a different idea of what is needed. So, it’s just important to respect each other.

Getting your affairs in order.

The first step in planning. So, now we’ve recognized that change is going to happen, and we’ve had the conversation. The first step in planning is to get your personal affairs in order. In the event of illness, disability, or even death it will be very helpful to your loved ones to make a few simple things now.

We suggest that you start by making a list of your important papers. Make sure the list includes where your papers can be found. Any advance directives for healthcare, make sure that they are given to the person you designate and also to your medical doctor. And also make sure that if you do a list, you can tell – tell your loved ones where they can find the important documents.

[Barb Engelhart]

You know, years ago we did not, generations before us did not discuss personal finance with their family. That was something very private. But we have to have that conversation now.

Especially knowing where those paperworks – the paperwork is. My mother died five years ago and had most of her paperwork all neat and tidy together. But she did have a Prudential life insurance policy, and I was the beneficiary. We did not know about that policy. And we have Prudential and some investments, so you get those privacy notices. I was tearing them up and at one point opened it just because and there it was that they were trying to get a hold of me, so

[Angie Joy]

Final notice.

[Barb Engelhart]

Dont – yeah -don’t take – dont take advantage that you’re just throwing a privacy, something might be very important in that paperwork that you’re receiving in the mail.

[Angie Joy]

We’ve included here a checklist of important papers. Social Security and Medicare information. Each year, if you are receiving Social Security benefits, you will receive a statement in about November of each year. It will tell you what your benefits will be for the next year. It’s really important to keep this piece of paper. It can be used as verification of your income or your benefit if you ever do need to apply for any type of services. So, we suggest you hang on to that. Make sure you put on your checklist where you can find your most recent will, living trust, or power of attorney for healthcare. Include important medical information and a list of medications taken.

We encourage you and have included in your bags today this file for life. This is something that can be found – it contains all the important information and can be left right on your refrigerator.

If your medications change often, you may not want to list them on here, but just ask for a copy from your doctor and tuck them in the back.

[unintelligible question from audience member – off mic]

[Barb Engelhart]

It has a nice magnet on the back for you to stick on your refrigerator in case ambulance crews come in, they know where to find that.

[Angie Joy]

We suggest also keeping on your list where your birth certificate, marriage certificate, military discharge papers, or citizenship paperwork can be found.

If you are a veteran, you will need your discharge papers for any benefits that you might be eligible for.

Include names of banks, account numbers, your tax returns, insurance information and policy numbers, contact information for your doctor, your attorney, or your financial advisor, sources of other income other than Social Security; liability, such as mortgages, debts, or property taxes, deeds and trusts for your home, your car titles and registration, and also where your safety depox – your safety deposit box is and where the key might be located.

[Barb Engelhart]

And in case you didn’t know this very important note, if the person that you have entrusted with making decisions for you and all your paperwork does not know where you keep that key, you will need a court order in order to open that safety deposit box. So, always making sure you get that person a key and they know exactly where it is kept.

So, who will make decisions when you no longer can?

Planning ahead means that you get to decide about your healthcare, your living will, power of attorney for healthcare, D.N.R., for those of who don’t know, that means Do Not Resuscitate, finances, power of attorney for finances, a conservator, a rep payee, and guardian.

Estate would be will, probate, living trust, and an estate planning attorney.

So, what happens if you don’t plan ahead?

Well, somebody may have to make decisions for you that you don’t know. Many times, you get a disinterested third party if families are not getting along. And then that person is just guessing at what you might want. So, if you leave here with anything, please do pre-planning. Get that power of attorney for healthcare.

[Angie Joy]

To ensure that your choice will follow.

[Barb Engelhart]

A guardian or conservator may need to be named by a judge. Also, if you don’t pre-plan, you’ll have to do things through probate. There are ways to avoid probate, and probably the financial attorney can help you with that.

[Angie Joy]

And now we’ll take you through a little more detail on each of those that Barb just listed. Healthcare advance directive, in the event of illness or accident, if you are no longer able to make decisions for yourself due to an incapacity, a healthcare advance directive can guide medical decisions and care on your behalf.

This – using a healthcare advance directive can make a difficult decision easier for medical personnel and your loved ones.

[Barb Engelhart]

So, a little more about healthcare advance directives. There are three common types. The Power of Attorney for Healthcare, Living Will, and the Do Not Resuscitate. The Power of Attorney for Healthcare, as we’ve stated before, let’s you name someone who will make decisions for you when you can’t. You can name a family member, a trusted friend, or an unmarried partner.

You can give a copy to the decision-maker, your doctor, and keep a copy for your records. If you choose to make one after the first one you’ve made, if you change your mind, the one that you did prior will be negated by the newest one that you have done.

Just a reminder to make sure that you’re letting everybody know when you have changed it, especially for your medical record, your provider.

The question that always comes up is, I’ll ask somebody: Do you have a Power of Attorney for Healthcare? They’ll answer: Yes. I’ll say: Is it activated? And they look at me like they don’t know what that means. So, when you do a Power of Attorney for Healthcare, that is your prevention tool. Once you have been deemed incapacitated, the doctor has a form where he will sign and get another colleague to sign in two places that you are incapacitated.

Now, that doesn’t mean that you’re always going to be incapacitated. Let’s say you’re in the hospital, you can’t make a decision, you’ve had a slight stroke, with rehab you come back. That doctor can un-activate – deactivate your Power of Attorney, so you are back to making decisions for yourself.

A Living Will outlines medical wishes and the type of care that you do or do not want.

Options for people who do not have a person to appoint to their P.O.A. of healthcare.

As I’ve said before, the Do Not Resuscitate is a formal request that you make with you and your doctor in case your heart stops beating. A lot of people that feel really strongly about D.N.R., I would advise them to get a bracelet because if you fall on the street or pass out on the street and E.M.T.s are called, they are going to resuscitate you unless you specifically have that bracelet on and turned, obviously, the right way because that’s what their job is.

[Angie Joy]

I just want to touch a little bit on the Living Will. Barb – Barb said this, but the biggest difference between the Power of Attorney for Healthcare and the Living Will is if you do not have somebody specific that you’d like to appoint, the Living Will can be used for you to still write down what your wishes are, what you hope for your medical care, and then your doctor will have that information to act on your behalf.

Healthcare advance directives.

[advances Power Point slide backwards]

I’m going the wrong way again.

[Barb Engelhart]

Um-hm, there you go

[Angie Joy]

So, writing a healthcare advance directive. You can do this by using. It’s a – its just a form, a legal document. You – your healthcare provider will have them. We have them at the Aging and Disability Resource Center. All local A.D.R.C.s will have a copy of this. The hospice agencies may also have a copy of them.

If you were hospitalized, you may have already completed one, and you might have that on file. You can also do it by working with your attorney.

Advance directives may need to be notarized or witnessed by two individuals. And it’s always important to give a copy to your doctor, your medical provider, the person you designate to make those decisions, and then keep a copy for yourself.

[Barb Engelhart]

Financial advance directives.

Your options are a Power of Attorney for Finance. It’s a legal document. It’s quite lengthy. It allows you to give the right to manage your financial affairs.

You get to choose when this is activated. Most of them are activated at the time of signature or if you’re no longer able to make decisions for yourself.

A Conservator is a legal proceeding that allows you to have somebody deal only with your finances. It is a court appointed conservator, which means you have to go to court and the judge will ask you if you voluntarily give someone permission to make decisions for you. You can change that at any time, and, again, it is totally voluntary.

[Angie Joy]

A Representative Payee is someone appointed by the Social Security Administration to manage a person’s Social Security income. So, it’s specific to Social Security.

[Barb Engelhart]

A Guardianship happens, in many instances, when a person does not have a Power of Attorney for Healthcare and is now deemed incompetent, which is just a higher level than incapacitation. A doctor fills out a five-page examining physician’s report. The guardian is appointed by the court. And this may – may be needed if you get to a nursing home and your Power of Attorney for Healthcare document says that that person may admit you to an assisted living or to a nursing home, but you get there and now you’re a little, have some dementia and you don’t want to stay there.

Once you start vocally saying that that person can’t keep you here and you don’t want to stay, that’s when people need to go back to court to get that guardianship because only a protective placement through the court can keep that person in a facility.

[Angie Joy]

So now we’re gonna – we’ve thought about it, we’ve talked about it, and we’ve started planning. Now we’re gonna talk about services that are available for long-term care.

So, again, long-term care means any ongoing support or service that will help with our personal and/or healthcare needs. It’s going to be very specific for each individual. It could be care provided to you by your spouse, your family, a neighbor, a friend. It could be a home health aide, or it could be a nurse. It is going to be care that could happen in your home, in a facility, or in a community setting.

[Barb Engelhart]

So, you consider the likelihood of needing care possibly due to an illness, an accident, or a disability, or just through the normal processes of aging.

[Angie Joy]

Long-term needs are going to vary depending on the person, and they may include help with cooking, shopping, cleaning, transportation. They might include a need for assistance with personal care that might include bathing or other grooming. They could be a need for one or two hours a week, or it could be full-time care.

[Barb Engelhart]

And the least fun thing to discuss about long-term care planning is: “How am I gonna finance that?” So, the costs of long-term care are gonna vary depending on where you live and your location.

In Wisconsin, at least northern Wisconsin, nursing homes can cost anywhere from about $6,000 to $7,500. If you live in New York, a monthly nursing home fee will be $14,000 a month. That doesn’t take very long to whittle away at your savings. So, in-home services and assisted living, they’re going to be a – a little more reasonable for you. And spending money on home to take care of your needs early on is going to help you maximize your long-term care dollars. Maybe it’s all you need is Meals on Wheels. Maybe you just need some help with bathing, just that extra supervision helps you to do well longer in your home.

[Angie Joy]

So, knowing the cost of what a service will cost and what is available in your area will help you plan for future before a crisis arises. When looking at the options available, are you going to be able to pay for private pay services? Will you have V.A. benefits that might assist? Are there other public assistance benefits that you’re already eligible for that might have services that they cover? Do you have insurance that will pay, long-term care insurance, or will you need publicly funded dollars?

We have included in your packet, and this is a publication by the Wisconsin Department of Health Services, a cost calculator. It’s called Considering a Move, and it’s a nice little tool. There’s a short version and a long version inside that you can kind of lay out what options you’re weighing. What are you looking at? Are you looking at a couple of hours of help in the home versus an assisted living? And you can calculate the cost, and it helps you stretch your – your personal finances further.

Aging at home.

Most of us would like to stay home as we age. To do so, we may need to make some changes to our home. Again, we talked about talking to your physician, planning for what changes might happen. Even if you’re healthy, you’re gonna see changes in your eyesight, your hearing, and your mobility. Looking at what you can do will help you plan.

[Barb Engelhart]

So, changes to your home that you can make for it easier, safer to live, might be adding grab bars in the bathroom, making sure you put them at a very user-friendly part of your bathroom. A toilet seat riser might just help you make that transfer from standing up to sitting down. Ramps work wonders for people who have wheelchairs or walkers. Also, a safer way to escape your home if you have to. Wider doorways make it easier for people to get through with their wheelchair or with a walker. And always our soapboxes is – is, those pretty rugs that help decorate your home are a danger to you as you age. So, removing those rugs, improving the light.

As our mobility chances and suddenly we’re not picking up our feet like we used to, we start shuffling, those rugs get caught in our ankles, and pretty soon we’re on the floor. And falls are just a – a bad option that we don’t want to hurt our chances of getting to stay home as long as possible.

[Angie Joy]

We’ve included in your, when – when you registered, this little pamphlet and your local Aging and Disability Resource Center will have options like this. Just small, little things that we maybe didn’t think of. Like Barb said, rugs or lighting can make a big difference. In fact, making some slight changes or improvements to our home can prevent up to half of all home accidents involving seniors.

So, resources.

We’re gonna – when you talk about resources, we talked about what you might need, and now how will you make that happen. You’re gonna start with natural supports. What services or what options do you already have in your home? Your spouse, your children, your neighbors. What are they able to do for you?

Another thought would be changes to your home. We’ve talked about that. Where can you go for resources for that? Your local Aging and Disability Resource Center will have information available on Center – in our area, Center for Independent Living and other resources that might help you for find medical equipment or adaptions to your home.

The other option will be local services. What is available to you? Home delivered meals. Personal emergency response systems, the little buttons. Some of them now can sense when you fall. You – you don’t even have to push them. And it’s a relatively reassuring service for usually less than $40 a month. Home care agencies, support of home care, respite care, transportation, hospice, and support groups, all information that is available in your community.

[Barb Engelhart]

The A.D.R.C. sponsors prevention programs several times during the year. One of those is “Stepping On.” All these programs are evidence-based, meaning that they work. “Living Well with Chronic Conditions” will help you live with the disease that you may have and how to take care of yourself better. As well as folks with dementia, there’s memory cafes that are starting up all over Wisconsin. The A.D.R.C. and the Alzheimer’s Association and several other people will be sponsoring a memory cafe in Amery. This is where you can bring your loved one and you come along with them. You have early dementia, and you’re not necessarily socially isolating yourself.

[Angie Joy]

[whispers 5 minutes]

Our information is listed here. We are the Aging and Disability Resource Center of Northwest Wisconsin. There is an A.D.R..C that serves all 72 counties in Wisconsin.

[Barb Engelhart]

So, when aging at home is not an option, a lot of times it’s not going to work for everybody. Senior housing is an option. Moving in with – with adult children may be an option. It may not be an option for some. Some parents don’t want to be a burden to their children. Don’t take it personally if that happens. There are a lot of reasons why it may or may not be the best options for you.

Assisted living can include a help with daily living skills, bathing, dressing, medications, socialization, and meals. Nursing homes are going to provide 24-hour skilled care. So, a little bit more skilled services and staff at a nursing home.

[Angie Joy]

When deciding where to live, first consider what is important to you or to your loved one. Ask friends or contacts what they know about different facilities or options available. Visit different facilities. If you like a facility, visit it more than once. Visit it at different times of the day. Ask both staff and residents what they think about the long – the facility.

[Barb Engelhart]

Checking out their activity schedule I think is always wise too. If you have someone who likes to stay busy, it’s important for you to look at what’s going on during the day, what meals are like. Ask those hard questions.

[Angie Joy]

End-of-life.

Thinking about end-of-life or the death of a loved one is not an easy thought, but it is part of planning. It will include talking about your personal preference.

[Barb Engelhart]

Palliative or hospice care. We have three hospice agencies available for you to talk to today. Palliative care is a new term that’s kind of a pre-hospice kind of care. And hospice care is a Medicare benefit.

Planning for your funeral or memorial. Pat Taylor is here. He can discuss that, and he will have a presentation later. A lot of people will write out their own obituaries. They will put what they want for their hymns or what their readings. It’s makes – its a great source of comfort for children down the road when they really might not have known what you wanted to say.

[Angie Joy]

When is it time to start talking about end-of-life wishes? We encourage you to start today. If possible, have these conversations before a crisis happens. It will make it easier for yourself and loved ones when looking at, when they know what you want for them.

Starting the conversation can be difficult. You might want to wait for, you know, a relaxed time or a place to talk. You might – you might need to initiate the conversation by just saying: Can we talk about this? And don’t be alarmed if – if there’s resistance or if you have to ask more than once.

And our last is connecting to the future.

As we age, it’s common to reflect on our life and look back at events that have happened to us.

[Barb Engelhart]

Tell your story. I think one of the most important things is every single one of us has our own story. And how important for us to leave that legacy behind to the people may – that may have questions down the road and now they no longer can ask you. Very, very important if you can and are comfortable doing that

[Angie Joy]

There are several ways that you can tell your story. We’ve listed a couple. You can create a scrapbook. You could let a family member interview you or do an audio/video and share some of your life memories. You can write a journal or a memoir. They – they make these little books too that younger generations are asking older generations, and it kind of starts the questions for you. So, it gets the conversation going. And it’s a way of documenting what somebody knows and what their life has shared so that it can be shared with younger generations.

Another suggestion is to go through old photos and label them. Just helping pass information on.

So that is it for us. This is, we’re gonna end now, and then we’ll take questions.

[applause]