Childless seniors face decisions on caregivers

Host Amber Smith: Upstate Medical University in Syracuse, New York, invites you to be The Informed Patient with a podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith.

Many adult children find themselves providing care to their aging parents, but what happens to people who do not have children as they age? Who takes care of these so-called "elder orphans"?

For some ideas about how this might work. I'm talking with Dr. Sharon Brangman. She's a distinguished service professor of geriatrics and the chief of geriatrics at Upstate.

Welcome back to "The Informed Patient," Dr. Brangman.

Sharon Brangman, MD: Hi. Thank you for having me again, Amber.

Host Amber Smith: Now, some people have spouses who become caregivers, and we'll be talking about that.

But there are also people who live happily on their own for decades, and then there's a health diagnosis or a fall down the stairs, and that suddenly upends their lives. So what happens when there are no adult children or no spouse to step in and help?

Sharon Brangman, MD: So that's a special challenge because we have found that caregivers provide a significant amount of care to people as they get older.

The government actually is happy to have somebody providing this care because it's not easily paid for by Medicare or even certain insurances unless you have long-term care insurance. So caregivers really help older people as they're aging, but increasingly we see people who either outlive all their relatives, or if they have relatives, they're not readily available.

But we also see people, especially women who never married or never had kids or maybe got divorced and have no kids. I also see people who have children who are either estranged or live far away, so they're not readily available to help when somebody starts to need care.

Host Amber Smith: And what happens if an older person with no family nearby arrives at the hospital, and they're incapacitated?

Would social workers try to find that person's primary care doctor?

Sharon Brangman, MD: Well, it's more than finding the primary care doctor, because when somebody comes to the hospital in the midst of a medical crisis, there are decisions to be made. And if that person is not able to make those decisions, and if they haven't appointed a guardian or a health care proxy to make those decisions for them, then that creates a problem for the health care team to figure out what is the best thing to do.

So that's one of the reasons why it is so important as we get older to make sure that we create a support network. And you don't want to wait until there's a crisis. Because when there's a crisis, then your options may be limited, or your wishes may not be carried out. So, in particular, if you are what they call an elder orphan or a solo elder, you need to make sure that you start thinking about things way before you need it.

And these are very hard conversations to have, because we have to start thinking about a time when we may not be independent, or we may have an illness that doesn't have an easy cure or an easy fix. And these are tough things to start talking about because we have to kind of confront our mortality and exactly what may be the end of life.

But if you avoid it, you are making a decision. By avoiding it, you are making a decision that you're not going to talk about it right now. And then when something comes up as it inevitably does, the situation can easily get out of control.

Host Amber Smith: If planning ahead is key, what types of things does a person need to consider?

Sharon Brangman, MD: Well, it's very important for older adults who do not have immediate family to have a friend network. They need to create a group of friends, and hopefully some of them are younger than they are. They probably need to call an elder-care lawyer who can help guide them in organizing their finances, setting up a health care proxy.

Although you can set up a health care proxy without an attorney, a health care proxy is someone who steps in when you're not able to make decisions for yourself. And so that should be someone who knows you very well and knows what you would want because you want that health care proxy to not think about what they would want personally, but to really act on your behalf as to what you would want.

And that may involve a long conversation. Again, another tough conversation to have, but a conversation with that person so they really understand what your goals are and what you value.

Some people need to find a geriatric care manager, and a geriatric care manager is a professional who knows the resources in that region and can help arrange home care or a move even. They can help arrange someone to clear out their house if their house is cluttered. They can help you figure out what services you need.

And then you need someone you trust to be a backup for your finances. And that, again, could be an attorney or a trusted friend or even an official at the bank, for example.

So that you have somebody who can back you up financially, legally and in terms of your health decision-making, and then help you manage those decisions that have to be made to help you get through the day.

Host Amber Smith: What do you think about long-term care insurance? Is that a good deal?

Sharon Brangman, MD: So, long-term care insurance can be an important tool to help you finance your home care or your nursing home care. It is very expensive, so many people do not have the financial resources to afford it. And of course, the longer you wait to get it, the more expensive it is. So, that can be an important tool, and that would be something to talk with your financial adviser with to see how that would help.

Host Amber Smith: And I think a lot of people presume that Medicare will just take care of everything they need, but that's not the case, right?

Sharon Brangman, MD: That is the No. 1 conversation that we have with families because they think Medicare will pay for home care.

Medicare will pay for your hospital stay. It will pay for doctor visits. If you have Medicare Part D, it will pay for medications.

But for that day-to-day care that you need for someone to help you get dressed or take a bath or get to the grocery store, that is not covered by Medicare. Medicaid is a different program, and it's for people who are financially stressed and don't have any money, and Medicaid will provide some services, but usually not enough to meet most people's needs.

So, Medicaid is an incomplete way of getting care in your home. It is, however, the biggest payer for nursing home care.

Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith. I'm talking with Dr. Sharon Brangman. She's a distinguished service professor at Upstate and the chief of geriatrics.

If an older person who has a spouse becomes ill or injured, the spouse may be thrust into the role of caregiver, especially if there are no children who are able to help. Do you see that happen often?

Sharon Brangman, MD: So, yes, that is a very common phenomenon that comes up. Long-term spouses, for better or for worse, for sickness and in good health, are the ones to provide that support.

Now, even with the best of intentions, sometimes that spouse is not able to provide that support because of their own age or health problems. Or what we see is that we'll have two spouses or two partners who have health changes that happen on a different trajectory. So one may be further down the path of needing help than the other.

So this is another situation where you have to have that clear conversation. As tough as it can be, you have to have that conversation to start to make good decisions. For example, I've had some couples where they decide that, they want to stay in their own home, and one of them may need home health assistance, but the other one doesn't.

Or both of them may need home health assistance, but one may need more than the other. So, they, again, may need help identifying a person who could come in. This is where a geriatric care manager can be very helpful. And you can have two people in the same household getting some assistance, but each one has different needs.

Another option is to move into assisted living, where one person can get more care than the other. So we have a number of assisted living facilities in our area, which range from totally independent care, where you live in your own apartment, to more enriched care, where you have somebody come in to either give you medications or to help you get started in the morning or get ready for bed or whatever the needs are.

And again, one partner may need more care than the other, but they're in the same place.

Host Amber Smith: Sudden life changes, like we're talking about, can be difficult and challenging for all involved, and there's a lot of medical considerations as people age, but there's also emotional issues that come up, and I wanted to get your input on a couple of situations that listeners may be able to relate to.

The first one is a husband who was a working professional was married to a wife who kept the household. The husband had surgery and suffered a stroke, and since then, as the man has declined, the wife has been angry toward him to the point of verbal abuse, something a close friend has recognized.

What could this close friend do to help the situation?

Sharon Brangman, MD: So, this is actually not an uncommon situation. Even if somebody has the best of intentions, caregiving is very, very hard. And if you are working or have other responsibilities, it is extremely stressful. So to me, that is a caregiver who needs help.

There are, again, people who can come in and help assess the situation and see exactly what the care needs are.

You need an assessment of the financial resources to see what is affordable and then figure out a way to give that caregiver some respite or relief. You need to have a breather. Caregiving can be 24/7, 365 days a year, and many caregivers put the needs of their loved one ahead of themselves, so we have had caregivers who don't sleep well, don't eat well, may miss their own doctor's appointments because they're taking care of their loved one. And they are not healthy either, physically or emotionally. Everyone needs a break, and we need to help them figure out how to make that happen. It doesn't mean that you are weak or incapable, it just means that you're human, and you can't do it all by yourself.

Host Amber Smith: Another couple are retirees for more than 10 years, and both have been very active over the years. Now all of that activity has taken a toll on one of the partners, requiring repeated joint replacement surgeries, plus the development of an autoimmune disease that leaves this person fatigued. So, the partner who remains healthy is finding it hard to be gracious about declining abilities and thinks about all of the things they can no longer enjoy together and fears that the world is closing for them, too.

Is there anything that can help in this situation?

Sharon Brangman, MD: So, again, very common for two people to have a different health trajectory. So this is another opportunity for a discussion to talk about a way for one person to maybe maintain some of those previous activities that they enjoy doing and provide some respite for that person to get away and enjoy those activities and maybe the relationships associated with it, but make sure that the person who needs the care isn't being neglected and can get that support also.

It is hard. Most people can't do it on their own, and that resentment can often make people feel guilty. It makes feel like they're a bad person or they're selfish.

But it's a very normal reaction when you are faced with a huge, overwhelming problem to solve, and it just highlights that you need help to work it through. People feel like they're in it alone, and nobody has ever gone through something like this before, when in actuality it's very, very common and you don't have to reinvent the wheel, because most of us who do this kind of work every day have seen so many of these situations. And there is support and there are resources out there. And we happen to live in an area, in Central New York, where there are resources that people can draw upon.

Host Amber Smith: Regarding mental and emotional problems of patients and of their caregivers. I'm talking about depression, anger, envy, others. These things might arise as the situation changes, but is it best to be proactive in some way or to wait and see if these things become a problem?

Sharon Brangman, MD: Well, it really depends on the person, because sometimes we worry about things that never happen. But it's also good to know what the possibilities are and what your options would be should they arise.

So this is where education is very important to kind of understand the disease trajectory, the care needs that might come up, so that you're aware of the options that are out there, and that you can sometimes get help predicting when you might need it. And that's one of the things that happens when you get a geriatric assessment in our office, is that sometimes we can help you see when those red flags may be waving.

So we do what's called anticipatory care, and we have things in place in anticipation of a need. Sometimes we can all be taken by surprise. Then you'd be able to gather those resources as quickly as you can.

Host Amber Smith: Dr. Brangman, I thank you so much for making time for this interview.

Sharon Brangman, MD: You're welcome. It's always a pleasure.

Host Amber Smith: My guest has been Dr. Sharon Brangman. She's a distinguished service professor of geriatrics and the chief of geriatrics at Upstate. I'm Amber Smith for Upstate's "HealthLink on Air."

"The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe. Find our archive of previous episodes at upstate.edu/informed.

This is your host, Amber Smith, thanking you for listening.