How to Deal With Being a Caregiver and Other ‘End of Life’ Advice
They call the end of life the “golden years” but getting old can be brutal. Many elderly Americans are often faced with financial, legal, and medical challenges they are not prepared to handle.
Until you or someone you’re close to reaches a point that they require extra help, it’s not something most of us think about. But it’s a theme that Pamela D. Wilson, a Colorado-based care navigator for the past 16 years specializing in elder care, is very familiar with. When a person’s health, memory, physical, or organizational abilities deteriorate, Wilson’s team provides a variety of skilled support to help meet their needs.
“There are a lot of different situations that come up as people get older, but there’s no school that teaches you how to deal with these things,” Wilson said. “Unless you have an experience younger in life that makes this clear, you just think that when you’re old you’ll be healthy, and life is going to be wonderful. But it’s usually not like that.”
Wilson’s book, “The Caregiving Trap: Solutions for Life’s Unexpected Changes,” examines some of the common challenges that come with old age, and offers strategies for individuals and families struggling to meet them.
Epoch Times talked to Wilson about the harsh realities that face the elderly, and why we should treat them with more compassion.
Epoch Times: What services does a care navigator provide?
Pamela Wilson: We can save you time, money, and agony. We know everybody who works in the industry, so it’s very easy for us to help people find a new doctor, find a new care community, or navigate some insurance issue compared to a family member who has no idea what to do, who to call, or what questions to ask when they’re trying to find information.
If you don’t ask the doctor the right question, or if you don’t use the right words when you’re talking to the insurance company, it’s going to take you five hours for what could take us only take fifteen minutes. There is terminology that people in the industry use to be able to get things done quickly, but this is also confusing for patients.
For example, if you go to the doctor, he will talk to you in industry language. But health literacy in the United States is at an 8th grade level. Many people can’t read their prescription bottles.
A lot of patients are afraid to ask questions because they don’t want to appear stupid. They have no idea what the doctor wants them to do because they don’t explain things in a way patients can understand. The system works one way, and the patients and their ability to understand health care work another.
Epoch Times: People have been getting old literally forever. So why is this process so difficult today?
Ms. Wilson: It’s because health care has become more difficult. Years ago, people died at 50 or 60. Something would happen suddenly, and they were done.
But today, people have pills to solve their problems. They don’t want to lose weight, exercise, or change their diet. Consumers want an easy solution, and the health care industry gives it to them. It extends their life, but it doesn’t necessarily add quality to their life at the end.
This means that all the health care at the end of life becomes more complicated. Instead of needing just a primary care doctor, they need a cardiologist, a gastroenterologist, a podiatrist, and an orthopedist. Lives extending into the 90s or 100s need a lot more care and attention, whereas before people just died.
Epoch Times: Do other countries handle this better? Are there any examples we can look to so we can improve our system?
Ms. Wilson: I don’t know any country that is necessarily handling this better, but some European countries don’t push so hard to prolong life, and they let people die if that’s their choice. In the United States, we don’t want to give up. We want to live to be 120 and still be healthy.
There are studies that show we spend more on health care than other countries, but the outcomes aren’t necessarily better. People still die. We just expect that insurance companies are going to approve all these life-saving measures.
Epoch Times: What are some common issues people come to you with?
Ms. Wilson: As people age, they often lose their organizational abilities. You’ll see piles of papers around the house. Bills are unpaid. Whether it’s just old age or memory loss, they lose the ability to keep up with the paperwork. In a lot of cases, we go in and make sure that people’s bills are getting paid, and their house is being maintained.
On the medical side, older people often don’t go to the doctor every two months as they should, they forget to take their medications, and they end up in the emergency room. It’s because they don’t know how to advocate for themselves. It gets harder when you’re 75, 80, or 85 to deal with all this stuff.
We also get adult kids who have parents or aunts and uncles and find that their situation is a train wreck and they don’t know what to do. But the parents say, “We’re fine. We don’t need any help.”
In those situations, we come in and serve as an independent party to talk to the parents and tell them that their kids are concerned. We say, “You may not think you need help, but let’s talk about their concerns, and get everything on the table so we can have a plan.”
We also serve as medical and financial power of attorney for people. Really, everybody over the age of 21 should have these documents just because of the crazy things that can happen.
If you’re in the hospital because of a car accident and you’re in a position where you can’t make a decision, whom do you trust? Do you have a sister, spouse, or someone who can make these decisions for you that you can trust to do what you want if something happens?
A lot of times people don’t trust their kids, or maybe their kids are in Los Angeles and they’re in New York, and they have nobody to do this for them.
For example, I was power of attorney for a lady for eight years, and she became incompetent, which means she got dementia and I had this documented.
Well, her son, who hadn’t seen her for years, found out about this and decided he wanted her money. He told a court: “I’m her only son. I should be the guardian.” I had to contest it because he had been gone for years, and he previously stole money from her, so I said he shouldn’t be the guardian.
The judge didn’t grant his request, but this kind of stuff happens, so you have to find people that you really trust to take care of you when something happens and you can’t do it yourself, even if it’s someone outside your family.
People who do this professionally look out for the best interest for the person both medically and financially. If a family member gets involved, they may be more interested in their inheritance. So this means that mom or dad may not get medical care, or get put into a horrible assisted living facility because the kid doesn’t want to spend the inheritance taking care of the parent.
Epoch Times: One of the things I noticed in your book is how drastically roles change when the adult child has to make decisions for the elderly parent. What are some challenges you see in families trying to negotiate this role reversal?
Ms. Wilson: If a parent had to take care of their parents, they usually talk to their kids about this when they’re younger, so it’s not so much of a surprise.
But what typically happens is that a parent will break a hip, all the kids show up, and they try to figure out what to do. The sister who lives in town will agree to take them to doctors’ appointments, the sister who lives in Los Angeles will help pay for things. It’s kind of like making a team to take care of the parent, and involving the parent so they feel like they have a say.
A lot of times, parents feel like their kids are talking down to them, or they fear they’re going to put them in a home or do something horrible. You have to say to the parents: “Look, we’re not here to take over. We’re here to do what you want, but we have to have these conversations so we can tell you what we can do.”
Some parents have unrealistic expectations. They expect the kids to show up every evening and weekend. They want them to do laundry and buy groceries, and that’s not realistic in some situations. So it’s a hard conversation. The kids may say: “Look, you’ve got to hire in-home care. I can come over once a week, but you need more than what I can do.”
Sometimes the kid doesn’t want to be a caregiver because they don’t have a good relationship with the parents so they don’t feel comfortable doing it.
Epoch Times: One of the things you talk about in your book is that oftentimes people make end-of-life decisions based more on emotion than logic. It seems that when deep family issues are involved, otherwise rational people easily fall into this trap.
Ms. Wilson: Totally. I have a situation right now that I just worked through where there was a child who relied on the parent all of her life. She had some mental illness, and unfortunately the parent fostered that.
Mom is 90 and needs to move out of the house, but the daughter relies on her for everything. The two other daughters who live out of town wanted the mother to go into assisted living. It turned into this huge court battle where the one daughter said she needed mom’s house and income.
A lot of these emotional decisions come because (I hate to say it) a lot of kids look at their parents as property or money. So there are battles over what the kids want to do with them, rather than what’s really best for mom and dad.
Then there’s guilt. Guilt is huge. The kids have promised they’d never put mom or dad in a home, so they continue living in their house. But they’re struggling. They’re falling. They have all these health issues. It’s either the parents are putting guilt on the kids, or the kids are putting guilt on themselves. They refuse to put the parents in a home, but really it could be the best thing.
Sometimes this emotional stuff goes back to childhood. “You were mom and dad’s favorite. I don’t want to help.” It becomes about who got the hula hoop, Barbie doll, and the train set.
In my family, after my parents passed away, my sister didn’t want to sell their house because she was emotionally attached to it. So I said, “Well, then you have to buy it because we can’t keep this house.” We were lucky. We didn’t have battles, and we eventually sold the house, but it was hard for my sister to let that go.
Epoch Times: We all have to face getting old one day. Do you have any thoughts on what we can do when we’re young to better prepare for our elder years?
Ms. Wilson: The first thing I always tell people is to take care of their health. It’s difficult to realize this when you’re 40 years old because if you have high blood pressure you might just take a pill to solve it.
Well, 40 years later, that high blood pressure can turn into dementia, liver problems, and other issues. You know, one little issue that you don’t deal with in your 40s can turn into all kinds of chronic conditions when you’re older.
If you can afford to, look at long-term care insurance, and do it when you’re young because it’s so much less expensive. For example, I got my policy when I was 40 because I work in this industry, and I’ve seen what can happen.
I pay $1,500 a year, which is not much more than my car insurance, so by the time I’m 65 or 70, it will be worth $3 million. It will pay for skilled nursing, assisted living, and home care. I can pretty much get whatever kind of care I want.
The other thing is to get your legal documents done. They may have to change over the years, but having a power of attorney is a like a backup plan if you get sick and don’t know what to do. You want someone you can trust to help you out so you won’t get left in a hospital on a ventilator for the rest of your life because you didn’t put something on paper.
There’s a video on my website of a 32-year-old guy here in Denver who fell backward when he was sitting on a retaining wall. He was a body builder, but he became totally reliant on a ventilator and feeding tube. He didn’t have any legal documents, but he wanted to die.
The hospital had to go through this whole ethical thing, saying: “We don’t know if he understands what he wants. Does he understand that he’ll be dead if we take him off these machines?” There was s battle, and he was miserable. He didn’t want to live like that, but he didn’t have it in writing.
He finally got approval to take him off of the machines. Unfortunately, he died from pneumonia a couple of weeks earlier. His case shows that if something happens and you don’t have these papers, you’re in trouble.
Epoch Times: If you could change anything about how society deals with our elderly population, what would it be?
Ms. Wilson: I think elderly people should be given more dignity and respect. Unfortunately, when people get older, society looks at them as dispensable and stupid because it takes them longer to do stuff.
Imagine you’re in the checkout line in the grocery, and you have an older person in front of you. They’re fumbling trying to write a check, or they’re trying to get change out of their pocket.
Younger people see that and they think: “Old people are such a pain. They shouldn’t be allowed to go into stores.” But when you’re that older person, you’re just trying to get along.
Society in general marginalizes older people. There is not enough consideration that we young folks are going to be in that same position someday.
So think about how you can be more helpful. How can we be more respectful to people who think and move slower? Some of these people have amazing wisdom, but we want to push them in a corner because we don’t want to be that person.
Even some older people don’t want to go to assisted living because they don’t want to be there with those old people. Old people do this to old people because they’re afraid that it’s going to happen to them. This fear of aging makes us want to distance ourselves from older people, and not be kind to them.
I think that if families talk about this to kids when they’re young, aging wouldn’t be so scary, we’d be more proactive, and we wouldn’t be so afraid of death. It would be a whole different society where we would be much more respectful.
Look at Chinese society. Their elders are important. We don’t make our elders important. We shut them into nursing homes and forget about them.
Answers have been edited for clarity and brevity.