ASK THE EXPERT
Your parents likely want to remain independent as long as possible. After all, the thought of having to rely on you or others for help probably isn’t that appealing to them.
The question, then, is how to help your parents live independently longer—or maintain a sense of independence. To find out, Carefull family finance expert Cameron Huddleston reached out to aging expert Melissa Batchelor for advice. Melissa is a gerontological registered nurse and the director of George Washington University’s Center for Aging, Health and Humanities.
Below is an edited version of Cameron’s interview with Melissa. To watch the entire interview, visit the Carefull Community.
How do you help parents stay independent?
Cameron Huddleston: No one wants to feel like they have to rely on someone else for help, but oftentimes our parents do need that help. What can we do to make it easier for them to maintain that sense of independence for as long as possible?
Melissa Batchelor: So you bring up two points. One is how do you help someone stay independent in their own home for as long as possible. Then, if they move out of their own home, what are some strategies to help them maintain independence. So that's kind of two separate things.
In order to live independently at home, you have to be able to move around. So if you're going to try to help someone stay independent, as long as possible, you have to do all the lifestyle stuff that we all already know to do, which is making sure that you're being active. Right now, sitting as a new smoking, and a lot of people, when they turn 65, they kind of retire to the couch and spending way more time sitting than walking. So making sure that you're up and active getting at least 10,000 steps in a day.
You try to keep your weight down because it takes more energy to carry around extra weight. Plus it's not good for your overall health. Making sure that you're getting enough sleep, drinking enough water and avoiding all the bad stuff that we already know we shouldn't be doing. It's the same type of things that we have to do to maintain our own independence. That part is not really all that hard.
Now, the second part of your question was how to help someone feel independent. If they have to move in with you, it's really just letting them set up their schedule, kind of making sure that expectations are clear and they need to have some responsibilities around the house as well. Everybody needs a sense of purpose. The most common mistake that caregivers make is just taking over. You've moved down with us, so we're going to do all the laundry and we're going to do all the cooking, and you're just supposed to sit there so we can look at you. That's not good.
How do you help parents with dementia maintain a sense of independence?
Cameron: What about those situations when the parent has dementia or has Alzheimer's disease, and you want to help keep Mom involved? So you're asking mom to set the table, you're asking her to help with the laundry, but because of dementia, mom is getting really confused and asking her to pitch in is really making things even more difficult for her because she has to come back to you and ask questions. Your attempt to make her feel involved is only making her feel more alienated because she’s struggling mentally to pitch in and help. What do you do in that situation?
Melissa: Make sure that you're breaking things down into single steps because the issue with Alzheimer's disease is that your memory is going. So you aren't able to remember a complex series of steps iinstead of giving her all the utensils, just give her the forks and say, “Go put the forks out.” And then when she comes back, “OK, now go put the knives out.” Instead of saying here's everything all at one time, break things down into simple, simple steps.
You have to tailor what they do or how they can participate based on what they enjoy doing and what's going to keep their attention. There was a lady in the nursing home that I worked at one time before, and she wanted to help us do stuff. So we would just bring in a laundry basket of washcloths and say, “We really need help. Can you help us with these washcloths?”
She would fold them all up and stack them in there and she'd be like, “OK, I'm done.” We would thank her for doing that. And we'd go back and mix them up again and bring them back. By the third time she goes, “Y'all need to get some more help around here.” I was like, “I think we've, e run out this activity. We need to find something else.”
You find activities that are meaningful to them that they can do. It doesn't necessarily have to be about them completing an activity or a task. It's just involving them in the social aspect of the family and what's going on.
How do you care for parents without taking away independence?
Cameron: Let me go back a little bit to the parents who are living independently. You see signs that they do need help. You want to get involved as their child because you love them and you want to protect them. How do you do that, though? How do you start getting involved and making sure Mom and Dad are okay without making Mom and Dad feel like you are coming in and taking over?
Melissa: If you think that there's like a memory problem—maybe they're not coming out as much, or maybe they're forgetting to pay a bill—I would get them in to see a primary care provider. Actually, I did a podcast on how to have this conversation with someone. It's more about making sure that it's not me against you. We're on the same team.
I think a lot of times people avoid the conversation because they're afraid that they're going to end up with a diagnosis of Alzheimer's, but Alzheimer's disease is a diagnosis of exclusion. There are a lot of other things that can be going on with your loved one. Like maybe their thyroid's out of whack or their B12 and folate are off. They could be anemic. They could be depressed. All of those things can appear as memory problems, but there's really an underlying physiological problem. So it's a really good idea to get them in to see a primary care provider so that we can begin the process of ruling other things out.
A primary care provider is really only going to be able to screen you through a mini mental state exam. That's just a screening tool. It's not diagnostic. There are other things that need to happen. Get the physical exam, physical assessment done and then deal with a specialist. We only have 6,400 geriatricians in this country out of a million physicians. So making sure that you find somebody with geriatric expertise is going to be important.
How involved should you be if your parent has dementia?
Cameron: With my mom, I remember trying to tread very lightly, not wanting to look like I was coming in and taking over. I looked for those areas where she seemed to be struggling more and offered help. Is that a good way to go about it? Not to say, “Mom and Dad, you're having problems. I'm here. I'm going to do it for you,” but trying to find those little areas where they need help and making that offer of help, instead of saying, “Let me do it for you.”
Melissa: I think the natural instinct is I'm just going to take over and do this for you. And that's really not what you need to do. That needs to be the last thing that you do. But you could say, “When you pay your bills this month, I want you to do it. Just let me check behind you because we can all make a mistake.” I think some parents would let you do that. And some parents won't. Approach it from: “I want to be helpful to you so that we don't make mistakes, but I also want you to do as much as you can for as long as you can.”
You always have to look at somebody with Alzheimer's disease and say, “What can they do today?” I think that's probably one thing for caregivers to get into that mindset of living in the present moment as the disease progresses and appreciating them for who they are in the moment, even though you're grieving the loss of who they used to be at the same time.
What are the signs that your parent can’t live independently?
Cameron: What are those signs that you should be looking for that you really need to step in a lot more—even if your parent is going to push back—to protect your parent's wellbeing?
Melissa: In childhood, you had developmental milestones, right? So you can feed yourself first. Then you can dress yourself. Then you can use the bathroom by yourself. The problem with Alzheimer's disease is there's not one trajectory of decline. You're going to lose your ability to manage your finances and cook a meal before you lose the ability to feed yourself. Actually, the first thing you mastered in childhood is the last thing that you lose with Alzheimer's disease. So it's a slippery slope because nobody declines in the same way or at the same rate.
Sometimes car accidents are one of the first signs that there's a memory problem ...If your loved one gets lost or they can't remember where they parked the car, those are early signs that we may be having some memory problems. But it needs to be a pattern. If you're seeing a pattern of unsafe behavior, that's when you have to step up. But there's not one right answer for everyone.
I would say to pay attention to those types of things: where there's a pattern, where there's an issue related to safety. Then it would depend on what their finances look like as to what you can do about it. Because if they don't have any money, they aren’t going into assisted living. You need to start looking at Medicaid. They're going to have to spend down all their assets to like less than a thousand dollars to qualify for that. And you really have no options there. So again, even if you see the signs, it goes back to their financial picture and how much money they have saved to determine what your next steps could be. Long-term care is out of pocket for a lot of people, or your family members take care of you.
When is it time to move your parent into assisted living?
Cameron:I think that what people sometimes struggle with, if there are the finances there to cover the cost of long-term care, is deciding when is the right time for a parent to stop living independently. There's all that guilt that you feel. Are there any quick tips you could offer people?
Melissa: I know that's hard for people to not feel guilty. But if you're putting your loved one in a place where they're safer and when you go to visit with her, you're gonna be able to enjoy your time with her instead of being stressed out or worried all the time, that's when you know it's time.
And sometimes it's good. I've had a lot of people that were living at home, they were isolated. They were lonely. I mean, it's bad to live by yourself and not have any human interaction. We've had people come into assisted living and into the nursing home setting, and they just bloom. And the family's like, “Oh my gosh. What's going on with him? He's doing so great.”
Sometimes it's not bad to put someone into a facility where they might make a friend, and they would have social activities, and they would be able to get out and do more. I don't think of having to move into assisted living or a nursing home as the worst thing in the world. It is a grieving process because you have lost some level of independence, but in assisted living. you're pretty independent. They just have people that come by and check on you. They scale the type and how much care you get based on how much you need.
There's another thing called the CCRC, continuing care retirement community. You actually have independent living before the assisted living before the skilled nursing home. And none of us know if you're even gonna get to make that whole lap. Anything could happen.
[Keep Reading: What You Need to Know About Long-Term Care]