Meeting with a physical therapist and educating yourself before you have joint replacement surgery can help you to have a quicker, less stressful recovery.

Patients who meet one-on-one with a physical therapist (PT) and educate themselves prior to knee or hip replacement surgery feel better prepared to leave the hospital and report less pain and joint stiffness during recovery compared to those who did not, according to a study by Hospital for Special Surgery (HSS). The study evaluated the effect of a face-to-face counseling session coupled with web-based education on patient satisfaction and functional outcomes.

The goal of the education session was to manage patient expectations of the surgery and recovery before undergoing the surgery—rather than after the surgery, when they might be dealing with fatigue, pain or anxiety—so they were able to better absorb and retain the information. Researchers followed 126 patients who underwent knee or hip replacement for osteoarthritis.

All patients attended a group education class before surgery—the standard of care for those scheduled for joint replacement at HSS. They were then randomized into two separate groups. In group one, 63 patients attended the one-on-one education session with a physical therapist in addition to the group class and were granted access to an informational web portal featuring videos. The control group of 63 patients attended the standard group class and received a booklet about what to expect after joint replacement—with no further education.

Using patient satisfaction and patient-reported scores to measure pain, joint stiffness and function both before and after surgery, researchers determined that the patients who attended the extra one-on-one PT counseling session indicated they were better prepared to leave the hospital after surgery and were overall more satisfied with the preoperative education they received. Almost 97 percent of these patients accessed the informational web portal, and all of them said they would recommend it for patients undergoing the same procedure.

Almost 70 percent of patients from the group that did not receive the supplemental educational session or web portal access believed they could have benefited from additional education before surgery. Patients who received one-on-one counseling also needed fewer physical therapy sessions in the hospital before discharge and met PT discharge measures sooner, including being able to get out of bed, walk with or without an assistive device and go up and down stairs independently.

The upshot of this research is that, if you are considering joint replacement surgery, ask to meet one-on-one with a physical therapist BEFORE your surgery if that is not your doctor’s standard approach. And take advantage of any and all learning materials your doctor may give you—specifically online videos and information.

The more you know, the better your recovery may be.

Meeting with a physical therapist and educating yourself before you have joint replacement surgery can help you to have a quicker, less stressful recovery.

Patients who meet one-on-one with a physical therapist (PT) and educate themselves prior to knee or hip replacement surgery feel better prepared to leave the hospital and report less pain and joint stiffness during recovery compared to those who did not, according to a study by Hospital for Special Surgery (HSS). The study evaluated the effect of a face-to-face counseling session coupled with web-based education on patient satisfaction and functional outcomes.

The goal of the education session was to manage patient expectations of the surgery and recovery before undergoing the surgery—rather than after the surgery, when they might be dealing with fatigue, pain or anxiety—so they were able to better absorb and retain the information. Researchers followed 126 patients who underwent knee or hip replacement for osteoarthritis.

All patients attended a group education class before surgery—the standard of care for those scheduled for joint replacement at HSS. They were then randomized into two separate groups. In group one, 63 patients attended the one-on-one education session with a physical therapist in addition to the group class and were granted access to an informational web portal featuring videos. The control group of 63 patients attended the standard group class and received a booklet about what to expect after joint replacement—with no further education.

Using patient satisfaction and patient-reported scores to measure pain, joint stiffness and function both before and after surgery, researchers determined that the patients who attended the extra one-on-one PT counseling session indicated they were better prepared to leave the hospital after surgery and were overall more satisfied with the preoperative education they received. Almost 97 percent of these patients accessed the informational web portal, and all of them said they would recommend it for patients undergoing the same procedure.

Almost 70 percent of patients from the group that did not receive the supplemental educational session or web portal access believed they could have benefited from additional education before surgery. Patients who received one-on-one counseling also needed fewer physical therapy sessions in the hospital before discharge and met PT discharge measures sooner, including being able to get out of bed, walk with or without an assistive device and go up and down stairs independently.

The upshot of this research is that, if you are considering joint replacement surgery, ask to meet one-on-one with a physical therapist BEFORE your surgery if that is not your doctor’s standard approach. And take advantage of any and all learning materials your doctor may give you—specifically online videos and information.

The more you know, the better your recovery may be.

Allie Overly, pictured sitting at the piano, found her way to Presbyterian SeniorCare Network in 1950 after visiting with a local church as part of the founding members of the Auxiliary. Now, nearly 70 years later, Allie still regularly volunteers at our Oakmont campus a few days a week. While she helps out wherever she is needed, Allie can most often be found creating musical moments at the piano in the lobby of The Willows, the skilled nursing community at the Oakmont campus. Allie plays, from memory, fun and inspiring tunes that are heard not only in The Willows, but also from the connecting hallways of Westminster Place, the personal care community at the Oakmont campus.

Pictured with Allie is resident BJ Crockett; BJ holds sheet music and sings along as Allie plays.

What a great bonding moment – and its music to our ears!

Allie Overly, pictured sitting at the piano, found her way to Presbyterian SeniorCare Network in 1950 after visiting with a local church as part of the founding members of the Auxiliary. Now, nearly 70 years later, Allie still regularly volunteers at our Oakmont campus a few days a week. While she helps out wherever she is needed, Allie can most often be found creating musical moments at the piano in the lobby of The Willows, the skilled nursing community at the Oakmont campus. Allie plays, from memory, fun and inspiring tunes that are heard not only in The Willows, but also from the connecting hallways of Westminster Place, the personal care community at the Oakmont campus.

Pictured with Allie is resident BJ Crockett; BJ holds sheet music and sings along as Allie plays.

What a great bonding moment – and its music to our ears!

How to cope when other relatives don't understand your decision

By Rachael Wonderlin

Beth came up to me, tears in her eyes.

“My cousins came into town,” she lamented. Normally this would not seem like a big deal, but Beth’s cousins were diametrically opposed to the idea of her moving her mother — their aunt — into a long-term dementia care community.

“They think I shouldn’t have moved Mom…they think I should have just kept taking care of her at home,” Beth sighed, dabbing at her eyes. “Maybe they’re right. Maybe I should just take Mom back home with me.”

More3 Surprising Things That Raise Your Dementia Risk

I would love to tell you that this was the first story of a family member getting shamed for moving their loved one into a care community, but it is not. I am the director of Memory Care at an assisted living community, and I’ve been working in dementia care for five years. I hear this kind of thing all the time.

Harsh Judgment

We’ve all heard of “shaming,” a phrase that seems to have picked up more popularity recently. We have seen everything from “body shaming” to “middle class shaming” in articles online. I’ve become very familiar with another type of shaming: shaming people for moving their loved ones into long-term care communities.

Although it would be very nice if everyone could take care of their aging loved ones at home forever, this is just not the case for many families. There are many factors involved: where the family lives, what jobs and responsibilities the family members have, what type of care the aging adult needs, financial concerns, nutrition and health concerns.

Most complicated are mental health concerns for the aging adult. Taking care of anyone at home is challenging. Taking care of an adult with dementia at home is particularly difficult. For example, if you are caring for someone with dementia in your three-story house, you cannot explain to that person that he or she should not attempt to use the stairs if they are home alone. People with dementia have trouble remembering facts, following directions, or understanding risks.

I cannot tell you how many people have had to move their loved ones with dementia into an assisted living or skilled nursing facility because of a major fall.

A Limited View

I explained all of this to Beth. I also reminded her that, no matter what her cousins from out of town had to say, they were not the ones caring for her mother. They didn’t come visit her every single day. They hadn’t been taking care of her at home for the past two years, watching her dementia progress and her falls become more frequent.

These cousins hadn’t retired early, just so they could help care for this aging woman in her own home. They weren’t taking time away from friends, other family, and vacations to bathe, clothe and feed this woman.

More3 Ways to Work From Home and Be a Caregiver, Too

Beth’s cousins had absolutely no idea what it was like to take care of another human being at home without much in the way of other help.

It’s Different With Kids

When you are raising children at home, there’s a community that rallies around you. You host big birthday parties, invite other parents and their children over to your house, plan nights out, call up babysitters, and, although you are probably exhausted, you feel joy in watching your children learn and grow.

From what I have seen, caring for an aging parent is the complete opposite. There is no sense of community. There is no joy in watching them grow and learn. There is only guilt, sadness and panic as you watch them descend deeper into physical and mental disability. There aren’t birthday parties, family gatherings and babysitters to lend you a hand.

A Common Theme

I offer a phone call service for caregivers who have questions about dementia care. While I always help these caregivers troubleshoot their dementia-related issues and provide advice about care communities or care at home, we always end up talking about guilt. All of these caregivers feel guilty, even the ones who are taking care of their loved ones at home.

They don’t give themselves time off, they don’t get paid, and they certainly don’t let themselves off the hook about mistakes they feel that they have made.

“Mom fell the other day,” one told me. “I left the room for 20 minutes to do her laundry, and I should have put the phone next to her — she could have called me for help! This was all my fault.”

‘Clean, State-of-the-Art’

Choosing to move a loved one into a care community is a personal decision. Care communities are also not the awful places we read about decades ago. “Putting someone in a home” does not carry the painful weight it used to carry.

Many of the care communities I’ve visited are clean, state-of-the-art buildings that offer social activities and outings. Sure, care communities are not perfect, but caring for people is an imperfect science. Choosing to move a loved one into assisted living or skilled nursing should not be a worst-case scenario. Sometimes it’s the best-case scenario for aging adults and their families.

My hope is that, as our population continues to age, our society will begin to understand the need for all types of care. The U.S. prides itself on being made up of many types of people and families. Yet we lack the progress and understanding that comes with accommodating different types of caregiving. You can care for a loved one from across the country and still be a fantastic caregiver. There is no shame in choosing the best possible care situation for you and your loved ones.

How to cope when other relatives don't understand your decision

By Rachael Wonderlin

Beth came up to me, tears in her eyes.

“My cousins came into town,” she lamented. Normally this would not seem like a big deal, but Beth’s cousins were diametrically opposed to the idea of her moving her mother — their aunt — into a long-term dementia care community.

“They think I shouldn’t have moved Mom…they think I should have just kept taking care of her at home,” Beth sighed, dabbing at her eyes. “Maybe they’re right. Maybe I should just take Mom back home with me.”

More3 Surprising Things That Raise Your Dementia Risk

I would love to tell you that this was the first story of a family member getting shamed for moving their loved one into a care community, but it is not. I am the director of Memory Care at an assisted living community, and I’ve been working in dementia care for five years. I hear this kind of thing all the time.

Harsh Judgment

We’ve all heard of “shaming,” a phrase that seems to have picked up more popularity recently. We have seen everything from “body shaming” to “middle class shaming” in articles online. I’ve become very familiar with another type of shaming: shaming people for moving their loved ones into long-term care communities.

Although it would be very nice if everyone could take care of their aging loved ones at home forever, this is just not the case for many families. There are many factors involved: where the family lives, what jobs and responsibilities the family members have, what type of care the aging adult needs, financial concerns, nutrition and health concerns.

Most complicated are mental health concerns for the aging adult. Taking care of anyone at home is challenging. Taking care of an adult with dementia at home is particularly difficult. For example, if you are caring for someone with dementia in your three-story house, you cannot explain to that person that he or she should not attempt to use the stairs if they are home alone. People with dementia have trouble remembering facts, following directions, or understanding risks.

I cannot tell you how many people have had to move their loved ones with dementia into an assisted living or skilled nursing facility because of a major fall.

A Limited View

I explained all of this to Beth. I also reminded her that, no matter what her cousins from out of town had to say, they were not the ones caring for her mother. They didn’t come visit her every single day. They hadn’t been taking care of her at home for the past two years, watching her dementia progress and her falls become more frequent.

These cousins hadn’t retired early, just so they could help care for this aging woman in her own home. They weren’t taking time away from friends, other family, and vacations to bathe, clothe and feed this woman.

More3 Ways to Work From Home and Be a Caregiver, Too

Beth’s cousins had absolutely no idea what it was like to take care of another human being at home without much in the way of other help.

It’s Different With Kids

When you are raising children at home, there’s a community that rallies around you. You host big birthday parties, invite other parents and their children over to your house, plan nights out, call up babysitters, and, although you are probably exhausted, you feel joy in watching your children learn and grow.

From what I have seen, caring for an aging parent is the complete opposite. There is no sense of community. There is no joy in watching them grow and learn. There is only guilt, sadness and panic as you watch them descend deeper into physical and mental disability. There aren’t birthday parties, family gatherings and babysitters to lend you a hand.

A Common Theme

I offer a phone call service for caregivers who have questions about dementia care. While I always help these caregivers troubleshoot their dementia-related issues and provide advice about care communities or care at home, we always end up talking about guilt. All of these caregivers feel guilty, even the ones who are taking care of their loved ones at home.

They don’t give themselves time off, they don’t get paid, and they certainly don’t let themselves off the hook about mistakes they feel that they have made.

“Mom fell the other day,” one told me. “I left the room for 20 minutes to do her laundry, and I should have put the phone next to her — she could have called me for help! This was all my fault.”

‘Clean, State-of-the-Art’

Choosing to move a loved one into a care community is a personal decision. Care communities are also not the awful places we read about decades ago. “Putting someone in a home” does not carry the painful weight it used to carry.

Many of the care communities I’ve visited are clean, state-of-the-art buildings that offer social activities and outings. Sure, care communities are not perfect, but caring for people is an imperfect science. Choosing to move a loved one into assisted living or skilled nursing should not be a worst-case scenario. Sometimes it’s the best-case scenario for aging adults and their families.

My hope is that, as our population continues to age, our society will begin to understand the need for all types of care. The U.S. prides itself on being made up of many types of people and families. Yet we lack the progress and understanding that comes with accommodating different types of caregiving. You can care for a loved one from across the country and still be a fantastic caregiver. There is no shame in choosing the best possible care situation for you and your loved ones.

What person-centered care means and how you can get it

By Patricia Corrigan

The way patients and health care providers think about health care delivery is changing, with an increasing desire to involve patients in decisions and planning. Today, many providers also work to meet patients’ needs that go beyond medical treatments. This philosophy is known as person-centered care.

The SCAN Foundation, an independent public charity (and funder of Next Avenue), defines that philosophy as putting older adults “at the center of the decision-making process” by making use of a care team “that considers the full range of needs of individuals and their families.”

Rebecca Kirch, executive vice president of health care quality and value at the nonprofit National Patient Advocate Foundation in Washington, D.C., is a proponent of the philosophy. “So often in our health care system, when we are asked what’s the matter, the provider’s response to our answer doesn’t always align with what matters in our lives to us or to our families,” Kirch says.

What does person-centered care look like, and how can you get it? Here are some examples and advice to help you start a conversation with your doctor about a broader range of care for yourself or a loved one:

‘We Listen to What Patients Need’

Sharp Rees-Stealy Medical Group in San Diego has committed itself to person-centered care, with the goals of improving communication channels and offering more support services.

“Medical groups across the country are paying more attention to what patients need and want because patient involvement produces the best outcomes,” says Janet Appel, Sharp Rees-Stealy’s director of population health. The organization serves some 220,000 patients who make more than a million doctor visits each year.

Appel added, “If people are not engaged in how they receive care, their health goals will most likely not be met.” The medical group practices person-centered care in several ways, including:

• Phone or video appointments
• Webinars on topics such as diabetes education
• Expanded evening and weekend hours
• Case management services
• Support programs
• Nurse navigators to help with difficult diagnoses
• Texting to receive reminders and health tips

“The texting program is especially popular,” Appel says. “Patients choose how often to receive texts with tips for healthy living, reminders about appointments or information on where and when flu shots are available. They can also text us with questions, and texting answers back to them helps us stay connected at the patients’ convenience.”

Appel noted that Sharp Rees-Stealy actively seeks feedback so it can make changes that will help communications and practices evolve based on what patients want. “We listen to what patients need in order to improve patient engagement to improve healthy outcomes,” she says.

Delivering Care Where Patients Are Is ‘Critical’

At Inland Empire Health Plan (IEHP), a not-for-profit Medi-Cal (California’s Medicaid program) and Medicare health plan, the focus on person-centered care extends to individuals who may need it the most. Based in Rancho Cucamonga, IEHP is a network of more than 6,000 providers and 2,000 team members who serve more than 1.2 million people.

Through the Affordable Care Act, a large pilot program called the Behavioral Health Integration and Complex Care Initiative allows IEHP to provide person-centered care for its low-income plan members at locations convenient to them.

Working with a dozen agencies, IEHP has staff at 30 sites. “We’ve put nurses, behavioral health specialists and care coordinators at primary care offices, behavioral health clinics, substance abuse treatment clinics, adult day care centers, assisted living centers and pain management clinics,” says Dr. Bradley P. Gilbert, IEHP’s chief executive officer.

“Many people we serve face many complicated issues, including with their health, housing, transportation and other challenges, so making sure they are part of the planning and then delivering care to them where they are is critical,” Gilbert says.

The project has made significant improvements in people’s health, based on measurements regarding depression, anxiety, blood pressure and more, Gilbert says. “We’ve had great feedback from members, and providers also say they like the structure of the health care delivery.”

Currently, the pilot program is in transition. The number of sites is increasing, and nurse care managers, social workers and community health workers are being added at each. Plus, IEHP is working to house high-risk members who are homeless.

Ask Your Doctor About Person-Centered Care

What about your needs?

Is it a hardship to arrange transportation for X-rays, screenings or blood tests done across town from your primary physician’s office? Maybe you see specialists in two separate health care systems and you want them to better coordinate your care. Could you benefit from a talk with a social worker about local agencies that help pay some living costs?

Speak up, the experts advise.

“Let your voice be heard,” Appel says. “Ask what patient-centered care means at your doctor’s office, and if it’s not available, ask how you can help get that started.” You may be surprised, she adds, at the doctor’s willingness to listen.

“The medical world has gotten into what retail has done all along — listening to the consumers and then drawing them in by offering what the consumers want,” she says. “Today, there is a lot of competition, with many places to go for health care.”

Person-centered care can be especially important when individuals are coping with serious illness. Kirch, at the National Patient Advocate Foundation, gave this example: “Palliative care, now part of mainstream medicine, presents a bullet-proof case for person-centered care that aligns treatment with the goals and the specific needs of the person and the family affected, rather than focusing only on the disease. Providers must ask about those goals, document them and honor them.”

‘What We Need Now is More Public Demand’

Like Appel, Kirch encourages speaking up for what you want from your provider. “Public demand makes medical practices change faster than any policy or payment incentive,” she says.

How would Kirch assess the status of person-centered care in the U.S. today? “We have more than a toehold, but not yet a foothold,” she says. “We have demonstration programs in place in some pockets of the country, but it’s not yet scaled to where it needs to be. Still, I’m optimistic. What we need now is more public demand.”

© Next Avenue - 2018. All rights reserved.

What person-centered care means and how you can get it

By Patricia Corrigan

The way patients and health care providers think about health care delivery is changing, with an increasing desire to involve patients in decisions and planning. Today, many providers also work to meet patients’ needs that go beyond medical treatments. This philosophy is known as person-centered care.

The SCAN Foundation, an independent public charity (and funder of Next Avenue), defines that philosophy as putting older adults “at the center of the decision-making process” by making use of a care team “that considers the full range of needs of individuals and their families.”

Rebecca Kirch, executive vice president of health care quality and value at the nonprofit National Patient Advocate Foundation in Washington, D.C., is a proponent of the philosophy. “So often in our health care system, when we are asked what’s the matter, the provider’s response to our answer doesn’t always align with what matters in our lives to us or to our families,” Kirch says.

What does person-centered care look like, and how can you get it? Here are some examples and advice to help you start a conversation with your doctor about a broader range of care for yourself or a loved one:

‘We Listen to What Patients Need’

Sharp Rees-Stealy Medical Group in San Diego has committed itself to person-centered care, with the goals of improving communication channels and offering more support services.

“Medical groups across the country are paying more attention to what patients need and want because patient involvement produces the best outcomes,” says Janet Appel, Sharp Rees-Stealy’s director of population health. The organization serves some 220,000 patients who make more than a million doctor visits each year.

Appel added, “If people are not engaged in how they receive care, their health goals will most likely not be met.” The medical group practices person-centered care in several ways, including:

• Phone or video appointments
• Webinars on topics such as diabetes education
• Expanded evening and weekend hours
• Case management services
• Support programs
• Nurse navigators to help with difficult diagnoses
• Texting to receive reminders and health tips

“The texting program is especially popular,” Appel says. “Patients choose how often to receive texts with tips for healthy living, reminders about appointments or information on where and when flu shots are available. They can also text us with questions, and texting answers back to them helps us stay connected at the patients’ convenience.”

Appel noted that Sharp Rees-Stealy actively seeks feedback so it can make changes that will help communications and practices evolve based on what patients want. “We listen to what patients need in order to improve patient engagement to improve healthy outcomes,” she says.

Delivering Care Where Patients Are Is ‘Critical’

At Inland Empire Health Plan (IEHP), a not-for-profit Medi-Cal (California’s Medicaid program) and Medicare health plan, the focus on person-centered care extends to individuals who may need it the most. Based in Rancho Cucamonga, IEHP is a network of more than 6,000 providers and 2,000 team members who serve more than 1.2 million people.

Through the Affordable Care Act, a large pilot program called the Behavioral Health Integration and Complex Care Initiative allows IEHP to provide person-centered care for its low-income plan members at locations convenient to them.

Working with a dozen agencies, IEHP has staff at 30 sites. “We’ve put nurses, behavioral health specialists and care coordinators at primary care offices, behavioral health clinics, substance abuse treatment clinics, adult day care centers, assisted living centers and pain management clinics,” says Dr. Bradley P. Gilbert, IEHP’s chief executive officer.

“Many people we serve face many complicated issues, including with their health, housing, transportation and other challenges, so making sure they are part of the planning and then delivering care to them where they are is critical,” Gilbert says.

The project has made significant improvements in people’s health, based on measurements regarding depression, anxiety, blood pressure and more, Gilbert says. “We’ve had great feedback from members, and providers also say they like the structure of the health care delivery.”

Currently, the pilot program is in transition. The number of sites is increasing, and nurse care managers, social workers and community health workers are being added at each. Plus, IEHP is working to house high-risk members who are homeless.

Ask Your Doctor About Person-Centered Care

What about your needs?

Is it a hardship to arrange transportation for X-rays, screenings or blood tests done across town from your primary physician’s office? Maybe you see specialists in two separate health care systems and you want them to better coordinate your care. Could you benefit from a talk with a social worker about local agencies that help pay some living costs?

Speak up, the experts advise.

“Let your voice be heard,” Appel says. “Ask what patient-centered care means at your doctor’s office, and if it’s not available, ask how you can help get that started.” You may be surprised, she adds, at the doctor’s willingness to listen.

“The medical world has gotten into what retail has done all along — listening to the consumers and then drawing them in by offering what the consumers want,” she says. “Today, there is a lot of competition, with many places to go for health care.”

Person-centered care can be especially important when individuals are coping with serious illness. Kirch, at the National Patient Advocate Foundation, gave this example: “Palliative care, now part of mainstream medicine, presents a bullet-proof case for person-centered care that aligns treatment with the goals and the specific needs of the person and the family affected, rather than focusing only on the disease. Providers must ask about those goals, document them and honor them.”

‘What We Need Now is More Public Demand’

Like Appel, Kirch encourages speaking up for what you want from your provider. “Public demand makes medical practices change faster than any policy or payment incentive,” she says.

How would Kirch assess the status of person-centered care in the U.S. today? “We have more than a toehold, but not yet a foothold,” she says. “We have demonstration programs in place in some pockets of the country, but it’s not yet scaled to where it needs to be. Still, I’m optimistic. What we need now is more public demand.”

© Next Avenue - 2018. All rights reserved.

How to cope when other realtives don't understand your decision

By Rachael Wonderlin

Beth came up to me, tears in her eyes.

“My cousins came into town,” she lamented. Normally this would not seem like a big deal, but Beth’s cousins were diametrically opposed to the idea of her moving her mother — their aunt — into a long-term dementia care community.

“They think I shouldn’t have moved Mom…they think I should have just kept taking care of her at home,” Beth sighed, dabbing at her eyes. “Maybe they’re right. Maybe I should just take Mom back home with me.”

More3 Surprising Things That Raise Your Dementia Risk

I would love to tell you that this was the first story of a family member getting shamed for moving their loved one into a care community, but it is not. I am the director of Memory Care at an assisted living community, and I’ve been working in dementia care for five years. I hear this kind of thing all the time.

Harsh Judgment

We’ve all heard of “shaming,” a phrase that seems to have picked up more popularity recently. We have seen everything from “body shaming” to “middle class shaming” in articles online. I’ve become very familiar with another type of shaming: shaming people for moving their loved ones into long-term care communities.

Although it would be very nice if everyone could take care of their aging loved ones at home forever, this is just not the case for many families. There are many factors involved: where the family lives, what jobs and responsibilities the family members have, what type of care the aging adult needs, financial concerns, nutrition and health concerns.

Most complicated are mental health concerns for the aging adult. Taking care of anyone at home is challenging. Taking care of an adult with dementia at home is particularly difficult. For example, if you are caring for someone with dementia in your three-story house, you cannot explain to that person that he or she should not attempt to use the stairs if they are home alone. People with dementia have trouble remembering facts, following directions, or understanding risks.

I cannot tell you how many people have had to move their loved ones with dementia into an assisted living or skilled nursing facility because of a major fall.

A Limited View

I explained all of this to Beth. I also reminded her that, no matter what her cousins from out of town had to say, they were not the ones caring for her mother. They didn’t come visit her every single day. They hadn’t been taking care of her at home for the past two years, watching her dementia progress and her falls become more frequent.

These cousins hadn’t retired early, just so they could help care for this aging woman in her own home. They weren’t taking time away from friends, other family, and vacations to bathe, clothe and feed this woman.

More3 Ways to Work From Home and Be a Caregiver, Too

Beth’s cousins had absolutely no idea what it was like to take care of another human being at home without much in the way of other help.

It’s Different With Kids

When you are raising children at home, there’s a community that rallies around you. You host big birthday parties, invite other parents and their children over to your house, plan nights out, call up babysitters, and, although you are probably exhausted, you feel joy in watching your children learn and grow.

From what I have seen, caring for an aging parent is the complete opposite. There is no sense of community. There is no joy in watching them grow and learn. There is only guilt, sadness and panic as you watch them descend deeper into physical and mental disability. There aren’t birthday parties, family gatherings and babysitters to lend you a hand.

A Common Theme

I offer a phone call service for caregivers who have questions about dementia care. While I always help these caregivers troubleshoot their dementia-related issues and provide advice about care communities or care at home, we always end up talking about guilt. All of these caregivers feel guilty, even the ones who are taking care of their loved ones at home.

They don’t give themselves time off, they don’t get paid, and they certainly don’t let themselves off the hook about mistakes they feel that they have made.

“Mom fell the other day,” one told me. “I left the room for 20 minutes to do her laundry, and I should have put the phone next to her — she could have called me for help! This was all my fault.”

‘Clean, State-of-the-Art’

Choosing to move a loved one into a care community is a personal decision. Care communities are also not the awful places we read about decades ago. “Putting someone in a home” does not carry the painful weight it used to carry.

Many of the care communities I’ve visited are clean, state-of-the-art buildings that offer social activities and outings. Sure, care communities are not perfect, but caring for people is an imperfect science. Choosing to move a loved one into assisted living or skilled nursing should not be a worst-case scenario. Sometimes it’s the best-case scenario for aging adults and their families.

My hope is that, as our population continues to age, our society will begin to understand the need for all types of care. The U.S. prides itself on being made up of many types of people and families. Yet we lack the progress and understanding that comes with accommodating different types of caregiving. You can care for a loved one from across the country and still be a fantastic caregiver. There is no shame in choosing the best possible care situation for you and your loved ones.

How to cope when other realtives don't understand your decision

By Rachael Wonderlin

Beth came up to me, tears in her eyes.

“My cousins came into town,” she lamented. Normally this would not seem like a big deal, but Beth’s cousins were diametrically opposed to the idea of her moving her mother — their aunt — into a long-term dementia care community.

“They think I shouldn’t have moved Mom…they think I should have just kept taking care of her at home,” Beth sighed, dabbing at her eyes. “Maybe they’re right. Maybe I should just take Mom back home with me.”

More3 Surprising Things That Raise Your Dementia Risk

I would love to tell you that this was the first story of a family member getting shamed for moving their loved one into a care community, but it is not. I am the director of Memory Care at an assisted living community, and I’ve been working in dementia care for five years. I hear this kind of thing all the time.

Harsh Judgment

We’ve all heard of “shaming,” a phrase that seems to have picked up more popularity recently. We have seen everything from “body shaming” to “middle class shaming” in articles online. I’ve become very familiar with another type of shaming: shaming people for moving their loved ones into long-term care communities.

Although it would be very nice if everyone could take care of their aging loved ones at home forever, this is just not the case for many families. There are many factors involved: where the family lives, what jobs and responsibilities the family members have, what type of care the aging adult needs, financial concerns, nutrition and health concerns.

Most complicated are mental health concerns for the aging adult. Taking care of anyone at home is challenging. Taking care of an adult with dementia at home is particularly difficult. For example, if you are caring for someone with dementia in your three-story house, you cannot explain to that person that he or she should not attempt to use the stairs if they are home alone. People with dementia have trouble remembering facts, following directions, or understanding risks.

I cannot tell you how many people have had to move their loved ones with dementia into an assisted living or skilled nursing facility because of a major fall.

A Limited View

I explained all of this to Beth. I also reminded her that, no matter what her cousins from out of town had to say, they were not the ones caring for her mother. They didn’t come visit her every single day. They hadn’t been taking care of her at home for the past two years, watching her dementia progress and her falls become more frequent.

These cousins hadn’t retired early, just so they could help care for this aging woman in her own home. They weren’t taking time away from friends, other family, and vacations to bathe, clothe and feed this woman.

More3 Ways to Work From Home and Be a Caregiver, Too

Beth’s cousins had absolutely no idea what it was like to take care of another human being at home without much in the way of other help.

It’s Different With Kids

When you are raising children at home, there’s a community that rallies around you. You host big birthday parties, invite other parents and their children over to your house, plan nights out, call up babysitters, and, although you are probably exhausted, you feel joy in watching your children learn and grow.

From what I have seen, caring for an aging parent is the complete opposite. There is no sense of community. There is no joy in watching them grow and learn. There is only guilt, sadness and panic as you watch them descend deeper into physical and mental disability. There aren’t birthday parties, family gatherings and babysitters to lend you a hand.

A Common Theme

I offer a phone call service for caregivers who have questions about dementia care. While I always help these caregivers troubleshoot their dementia-related issues and provide advice about care communities or care at home, we always end up talking about guilt. All of these caregivers feel guilty, even the ones who are taking care of their loved ones at home.

They don’t give themselves time off, they don’t get paid, and they certainly don’t let themselves off the hook about mistakes they feel that they have made.

“Mom fell the other day,” one told me. “I left the room for 20 minutes to do her laundry, and I should have put the phone next to her — she could have called me for help! This was all my fault.”

‘Clean, State-of-the-Art’

Choosing to move a loved one into a care community is a personal decision. Care communities are also not the awful places we read about decades ago. “Putting someone in a home” does not carry the painful weight it used to carry.

Many of the care communities I’ve visited are clean, state-of-the-art buildings that offer social activities and outings. Sure, care communities are not perfect, but caring for people is an imperfect science. Choosing to move a loved one into assisted living or skilled nursing should not be a worst-case scenario. Sometimes it’s the best-case scenario for aging adults and their families.

My hope is that, as our population continues to age, our society will begin to understand the need for all types of care. The U.S. prides itself on being made up of many types of people and families. Yet we lack the progress and understanding that comes with accommodating different types of caregiving. You can care for a loved one from across the country and still be a fantastic caregiver. There is no shame in choosing the best possible care situation for you and your loved ones.

A Collaboration Founded on Compassion: Family Hospice and Palliative Care

The stability and longevity of the Presbyterian SeniorCare Network—which, since 1928, has focused on serving the needs of older adults and their families—has made us a trusted and preferred partner for many other organizations serving the same communities and populations.

One organization with which we have had a longstanding collaboration is Family Hospice and Palliative Care of Pittsburgh. About 16 years ago, we recognized the need for our residents to receive end-of-life care that met their complete emotional, spiritual, physical and social needs. Rather than try to build our own from scratch, we reached out to Family Hospice, which was already a leader in the field, to partner with us. The result was our Woodwell Program, an end-of-life program that is offered in our residential communities.

The Woodwell Program provides holistic support that increases comfort through individualized symptom and pain management using massage, music, art, pet and aroma therapies and other techniques. The program is available to any resident who has been identified as having a life-limiting illness.

As a respected hospice caregiver in the Pittsburgh and surrounding area, Family Hospice was the perfect choice to collaborate with us. In addition to shared values, we both are nonprofit, mission-driven, community-based organizations serving the western Pennsylvania region. Because we both were well-established, we forged a unique collaboration committed to the highest quality care and outcomes.

“We’re grateful to be partnering with an experienced organization with the same vision and commitment to quality,” says Eric Horwith, director of growth and business development at Family Hospice, who was a member of the original Woodwell team and currently oversees the Woodwell initiative. “Working with Presbyterian SeniorCare Network, we were able to develop specialized processes and protocols specific to hospice care delivery in the long-term care setting.”

Eric cited joint care plans between Family Hospice and the long-term care community, which outline goals and techniques for each resident, as a key mechanism for providing seamless overlap. In addition, dedicated care teams for each community provide a consistent presence on each campus and help ease difficult adjustments for residents and families. “These efforts center on providing the best overall experience for those we serve,” he adds. By its very nature, hospice is completely person-centered. “Our partnership in the Woodwell Program has always embraced personalized care,” says Eric. “In that respect, Presbyterian SeniorCare Network was far ahead of the curve in offering the person-centered philosophy that is now being adopted throughout all of health care.”

Family Hospice’s recent affiliation with UPMC will expand the organization’s footprint throughout western and central Pennsylvania. In addition, it will further strengthen the Presbyterian SeniorCare Network partnership by continuing to advance medical techniques and providing access to UPMC’s research, education and technology resources for our residents and families.

Explaining Hospice and Palliative Care

Hospice and palliative care often are not well-understood. Palliative care is described as a philosophy of care rather than a level of service. Persons on hospice receive palliative care, but persons receiving palliative care are not necessarily on hospice.

“Palliative care is designed to assess symptoms, such as pain and nausea, and manage them as a part of good medical care,” says Kristin Henderson, senior director of clinical services at Presbyterian SeniorCare Network. “It is not necessarily end-of-life care because it helps people live better and more comfortably with a life-limiting health issue. And it can keep people out of the hospital and in their homes longer.”

Hospice or end-of-life care is more all-encompassing, consisting of nursing care, spiritual care, pain management and other therapies to help the resident live out their days with dignity. Hospice care also includes bereavement support for families to help them prepare for and deal with the dying process.

“Hospice is often described as the best medical benefit you can get, but because of misunderstandings about it, many people access it very late,” says Barbara Ivanko, president of Family Hospice and Palliative Care, our partner in the Woodwell Program.

“Hospice is designed for months of care and support for a patient and family but, generally, families access hospice too late to receive the full benefit from it. Half of those who receive hospice care get it only in the last two weeks of their lives. Many families say that they wish they’d have accessed their loved ones’ hospice benefits sooner.”

November is National Hospice Month and a fitting opportunity to recognize our partnership with Family Hospice and Palliative Care. We are so proud that this partnership has helped and inspired many through our over 10 years of collaboration. 

A Collaboration Founded on Compassion: Family Hospice and Palliative Care

The stability and longevity of the Presbyterian SeniorCare Network—which, since 1928, has focused on serving the needs of older adults and their families—has made us a trusted and preferred partner for many other organizations serving the same communities and populations.

One organization with which we have had a longstanding collaboration is Family Hospice and Palliative Care of Pittsburgh. About 16 years ago, we recognized the need for our residents to receive end-of-life care that met their complete emotional, spiritual, physical and social needs. Rather than try to build our own from scratch, we reached out to Family Hospice, which was already a leader in the field, to partner with us. The result was our Woodwell Program, an end-of-life program that is offered in our residential communities.

The Woodwell Program provides holistic support that increases comfort through individualized symptom and pain management using massage, music, art, pet and aroma therapies and other techniques. The program is available to any resident who has been identified as having a life-limiting illness.

As a respected hospice caregiver in the Pittsburgh and surrounding area, Family Hospice was the perfect choice to collaborate with us. In addition to shared values, we both are nonprofit, mission-driven, community-based organizations serving the western Pennsylvania region. Because we both were well-established, we forged a unique collaboration committed to the highest quality care and outcomes.

“We’re grateful to be partnering with an experienced organization with the same vision and commitment to quality,” says Eric Horwith, director of growth and business development at Family Hospice, who was a member of the original Woodwell team and currently oversees the Woodwell initiative. “Working with Presbyterian SeniorCare Network, we were able to develop specialized processes and protocols specific to hospice care delivery in the long-term care setting.”

Eric cited joint care plans between Family Hospice and the long-term care community, which outline goals and techniques for each resident, as a key mechanism for providing seamless overlap. In addition, dedicated care teams for each community provide a consistent presence on each campus and help ease difficult adjustments for residents and families. “These efforts center on providing the best overall experience for those we serve,” he adds. By its very nature, hospice is completely person-centered. “Our partnership in the Woodwell Program has always embraced personalized care,” says Eric. “In that respect, Presbyterian SeniorCare Network was far ahead of the curve in offering the person-centered philosophy that is now being adopted throughout all of health care.”

Family Hospice’s recent affiliation with UPMC will expand the organization’s footprint throughout western and central Pennsylvania. In addition, it will further strengthen the Presbyterian SeniorCare Network partnership by continuing to advance medical techniques and providing access to UPMC’s research, education and technology resources for our residents and families.

Explaining Hospice and Palliative Care

Hospice and palliative care often are not well-understood. Palliative care is described as a philosophy of care rather than a level of service. Persons on hospice receive palliative care, but persons receiving palliative care are not necessarily on hospice.

“Palliative care is designed to assess symptoms, such as pain and nausea, and manage them as a part of good medical care,” says Kristin Henderson, senior director of clinical services at Presbyterian SeniorCare Network. “It is not necessarily end-of-life care because it helps people live better and more comfortably with a life-limiting health issue. And it can keep people out of the hospital and in their homes longer.”

Hospice or end-of-life care is more all-encompassing, consisting of nursing care, spiritual care, pain management and other therapies to help the resident live out their days with dignity. Hospice care also includes bereavement support for families to help them prepare for and deal with the dying process.

“Hospice is often described as the best medical benefit you can get, but because of misunderstandings about it, many people access it very late,” says Barbara Ivanko, president of Family Hospice and Palliative Care, our partner in the Woodwell Program.

“Hospice is designed for months of care and support for a patient and family but, generally, families access hospice too late to receive the full benefit from it. Half of those who receive hospice care get it only in the last two weeks of their lives. Many families say that they wish they’d have accessed their loved ones’ hospice benefits sooner.”

November is National Hospice Month and a fitting opportunity to recognize our partnership with Family Hospice and Palliative Care. We are so proud that this partnership has helped and inspired many through our over 10 years of collaboration. 

An immersive multimedia environment may give people a sense of purpose

By Shayla Thiel Stern
September 7, 2018

Part of the Transforming Life as We Age Special Report

What if people with dementia, Alzheimer’s or cognitive impairment could enter a world that is comfortable, beautiful, friendly — and that they could control?

Too often, memory loss means losing a sense of identity and control over your living space. Mandy Salomon, a researcher-turned-entrepreneur, wants to change that.

Her research involved not only learning more about engagement with people who have dementia, but also how to build an online platform that would provide a means for interaction so she could take her research from theoretical to real-world application. Salomon named the app and its multimedia world “Deva World,” and co-founded (with Serge Soudoplatoff) a Silicon Valley tech startup, Mentia, which is getting Deva World into the hands of people with Alzheimer’s and their caregivers. I recently interviewed Salomon about her research and company and their goals for impacting people with dementia, technology-entrepreneur developed an online game — really, a virtual world that people with dementia can access with a tablet — that she hopes will help people with dementia regain a sense of self.  After a career in media, Salomon went to graduate school at Swinburne University of Technology in Melbourne, Australia to study virtual communities and identity. Her doctoral work resulted in a dissertation titled, “Finding Self in a Virtual World: Digital Engagement for People with Moderate to Advanced Dementia.”

Next Avenue: Why did you decide to build Deva World?

Mandy Salomon: People really started to think in the 1990s about expressing a social self in order to be well, in spite of the neurological diseases they may have had. So you would look at people with dementia and Alzheimer’s, and there was the biomedical disability — the attack on the brain — but there was also this social disability that comes with losing the opportunity to express who you are.

A sense of self becomes so depleted in people with dementia, and with that lower self-esteem, and with that inability to express who you are and have others understand, often comes depression, anxiety, agitation and all the behaviors that then people try to make better with drugs.

I previously had worked in media for many years, and did research within digital media, and it seemed wrong that the digital world was letting down people with cognitive impairment like this. Deva World came about because I decided to look at how we can take the underlying stimuli of the engagement and enrichment activities that you would get in a person-centered assisted living residence, and take that underlying stimuli and see them as means almost that you could import into a virtual environment. I thought it might be an alternative for people and a means of rebuilding a sense of self.

So, you created a virtual world where people with dementia can help an avatar do various things around her home and garden. How does this work? 

A virtual companion greets the people who open the Deva World app — a friendly person who sometimes needs assistance, sometimes congratulates assistance given, sometimes makes suggestions. In our world, Julie — we call her Julie because she’s based on Julie Andrews — needs help with choosing a picture to put on the wall or putting on music, and everything is contextually placed in the game: If want to find the music, you find the record player in the sitting room because that’s where music is.

Why the focus on Julie, a character, rather than from their own first-person perspective?  

In focus groups that I ran in my research, it was very clear that people with cognitive disabilities still want to be valued as someone who can help and give assistance. Some of the caregivers spoke very movingly about how even some of the most disabled people would go out of their way to help another person.

Everything is based on the sort of best practice thinking around person-centered care. They also will have an in-person companion — a caregiver or care companion who will talk to them and ask them about the choices they make in Deva World.

How do people with dementia who play in Deva World react? 

The person with dementia will come up with their own stories. They’ll tack on something that will remind them of something, and then the care companion has to sort of draw that story out that’s part of the thing. A lot of interaction occurs. But if you just expect it to be like a video game where everything happens for you, it’s not so much like that. It’s more like a narrative, and you draw stories out as you move through and explore and navigate.

Are people, often older adults who might not have experience in online gaming or using a tablet, able to figure out the game? 

The platform was co-designed with people who were receiving memory care. I worked with them to observe their interactions and see what kinds of interactions on the tablet were easy for them. Could they swipe? Or was it just tapping? Or could they zoom? And what kind of dexterity was required?  And also what stimuli they responded to in terms of graphical design. Things that were too messy had to be simplified. Things that were too dark had to be lightened, colors had to be bright. All those sorts of design elements were determined after working with with people in assisted living and full-time memory care.

How can people play in Deva World? 

Well, first, it’s on a touch screen tablet. It can be either an iOS or an Android-based tablet, any tablet. A caregiver should go to our website and join. The first month is free [after that, it’s $20 a month for individuals]. You will set up your profile there and then go to the App Store for an iPad or Google Play store for an Android or other tablets, and once you download, you are ready to begin exploring.

An immersive multimedia environment may give people a sense of purpose

By Shayla Thiel Stern
September 7, 2018

Part of the Transforming Life as We Age Special Report

What if people with dementia, Alzheimer’s or cognitive impairment could enter a world that is comfortable, beautiful, friendly — and that they could control?

Too often, memory loss means losing a sense of identity and control over your living space. Mandy Salomon, a researcher-turned-entrepreneur, wants to change that.

Her research involved not only learning more about engagement with people who have dementia, but also how to build an online platform that would provide a means for interaction so she could take her research from theoretical to real-world application. Salomon named the app and its multimedia world “Deva World,” and co-founded (with Serge Soudoplatoff) a Silicon Valley tech startup, Mentia, which is getting Deva World into the hands of people with Alzheimer’s and their caregivers. I recently interviewed Salomon about her research and company and their goals for impacting people with dementia, technology-entrepreneur developed an online game — really, a virtual world that people with dementia can access with a tablet — that she hopes will help people with dementia regain a sense of self.  After a career in media, Salomon went to graduate school at Swinburne University of Technology in Melbourne, Australia to study virtual communities and identity. Her doctoral work resulted in a dissertation titled, “Finding Self in a Virtual World: Digital Engagement for People with Moderate to Advanced Dementia.”

Next Avenue: Why did you decide to build Deva World?

Mandy Salomon: People really started to think in the 1990s about expressing a social self in order to be well, in spite of the neurological diseases they may have had. So you would look at people with dementia and Alzheimer’s, and there was the biomedical disability — the attack on the brain — but there was also this social disability that comes with losing the opportunity to express who you are.

A sense of self becomes so depleted in people with dementia, and with that lower self-esteem, and with that inability to express who you are and have others understand, often comes depression, anxiety, agitation and all the behaviors that then people try to make better with drugs.

I previously had worked in media for many years, and did research within digital media, and it seemed wrong that the digital world was letting down people with cognitive impairment like this. Deva World came about because I decided to look at how we can take the underlying stimuli of the engagement and enrichment activities that you would get in a person-centered assisted living residence, and take that underlying stimuli and see them as means almost that you could import into a virtual environment. I thought it might be an alternative for people and a means of rebuilding a sense of self.

So, you created a virtual world where people with dementia can help an avatar do various things around her home and garden. How does this work? 

A virtual companion greets the people who open the Deva World app — a friendly person who sometimes needs assistance, sometimes congratulates assistance given, sometimes makes suggestions. In our world, Julie — we call her Julie because she’s based on Julie Andrews — needs help with choosing a picture to put on the wall or putting on music, and everything is contextually placed in the game: If want to find the music, you find the record player in the sitting room because that’s where music is.

Why the focus on Julie, a character, rather than from their own first-person perspective?  

In focus groups that I ran in my research, it was very clear that people with cognitive disabilities still want to be valued as someone who can help and give assistance. Some of the caregivers spoke very movingly about how even some of the most disabled people would go out of their way to help another person.

Everything is based on the sort of best practice thinking around person-centered care. They also will have an in-person companion — a caregiver or care companion who will talk to them and ask them about the choices they make in Deva World.

How do people with dementia who play in Deva World react? 

The person with dementia will come up with their own stories. They’ll tack on something that will remind them of something, and then the care companion has to sort of draw that story out that’s part of the thing. A lot of interaction occurs. But if you just expect it to be like a video game where everything happens for you, it’s not so much like that. It’s more like a narrative, and you draw stories out as you move through and explore and navigate.

Are people, often older adults who might not have experience in online gaming or using a tablet, able to figure out the game? 

The platform was co-designed with people who were receiving memory care. I worked with them to observe their interactions and see what kinds of interactions on the tablet were easy for them. Could they swipe? Or was it just tapping? Or could they zoom? And what kind of dexterity was required?  And also what stimuli they responded to in terms of graphical design. Things that were too messy had to be simplified. Things that were too dark had to be lightened, colors had to be bright. All those sorts of design elements were determined after working with with people in assisted living and full-time memory care.

How can people play in Deva World? 

Well, first, it’s on a touch screen tablet. It can be either an iOS or an Android-based tablet, any tablet. A caregiver should go to our website and join. The first month is free [after that, it’s $20 a month for individuals]. You will set up your profile there and then go to the App Store for an iPad or Google Play store for an Android or other tablets, and once you download, you are ready to begin exploring.

Advice from a Care.com vp, the author of 'My Parent's Keeper'

(Excerpted from My Parent’s Keeper: The Guilt, Grief, Guesswork, and Unexpected Gifts of Caregiving  by Jody Gastfriend. Copyright © 2018 by Jody Gastfriend. Excerpted by permission of Yale University Press. All rights reserved.)

Providing caregiving for your parent is a profound life-altering shift of roles that requires balancing the right to self-determination with the recognition that your mother and father need help. One of the biggest frustrations for adult children is that they come up with a plan that makes perfect sense to them but their parent says, “Thanks but no thanks.”

When our parents’ refusal to accept help puts their safety and well-being in jeopardy, we feel compelled to act, yet our good intentions are often thwarted. Over the years, I have heard countless stories of caregivers who tried strong-arming their parent to accept help — only to feel angry and dismayed when their efforts failed.

When a Parent Refuses Caregiving Help

For some sons and daughters, getting your parent to accept help may require more than just strategy, patience and a plan. It may take a crisis.

Take the case of Rachel and her mother Sally. At 88, Sally insisted she was safe driving despite evidence to the contrary. When Sally had to stop driving, due to flunking a driving assessment, she was devastated. But she was also willing to consider outside help. And there was the opening.

Rachel persuaded her mother to hire a professional caregiver, who assumed the roles of chauffeur, housekeeper and companion. Rachel breathed a sigh of relief.

What can adult children do when their parent refuses help? We can work with them — as much as possible — and not against them. We can empathize with their fears and not take their resistance personally.

But that doesn’t mean we accept any behavior, no matter how problematic and risky, and allow ourselves to be whipsawed and trodden upon, like a caregiving doormat.


’I Don’t Need More Help’

“I’ve got daughters. So I don’t need more help,” explained Ed, a strong-willed 85-year-old with type 2 diabetes that was spiraling out of control. “He’s got a hard- headed thing going on,” Jan said of her stepfather.

In the months after Jan’s mother died, Ed’s health markedly declined. Ed grew more confused, driving around not knowing where he was and frequently forgetting to take his insulin. When his blood sugar spiked to a dangerous degree, Ed refused to go the hospital. Jan, upset and alarmed, pleaded with her stepfather and eventually called 911 against his wishes.

Since Jan was unmarried, she was the daughter designated to take it all on. After leaving her temp job to be a full-time caretaker, Jan could no longer afford her apartment. So she moved in with Ed and braced herself for the rough road ahead.

First, Ed spent a week in the hospital and had two toes amputated. Then he was discharged home with infected ulcers. Despite all of Jan’s efforts, the ulcers worsened and Ed’s leg had to be amputated. Although Ed was able to put on his own prosthetic, he refused to do so and was confined to a wheelchair.

Compounding things further, Ed would not agree to an outdoor ramp, making movement in and out of the house a Herculean task. He was stuck — physically and emotionally. And so was Jan.

The wake-up call came from an unexpected source — Ed himself. Ed began to worry about Jan’s health and urged her to see a doctor. When Jan finally did, it was bad news. Jan too was diabetic. It was time to get more help and learn to say no.

Finding Workable Solutions

“I can’t do this on my own any longer.” Jan said to her sister. Rather than ask tentatively as she had done in the past, Jan explained matter-of-factly what she needed: help on evenings and weekends with their father’s care.

Then Jan told Ed he didn’t have the choice to refuse the ramp — it was going to happen. Jan even found grant funding through the city department of planning to pay for the ramp installation.

“And when I was able to wheel him in and out of the house, he was happy about the ramp! I even got him to put on his prosthetic so he wouldn’t be stuck in the wheelchair all day,” said Jan.” I learned I could not always wait for my father to agree to everything.”

Understanding a Parent’s Resistance

Our parents, especially those with chronic illnesses, may fear losing their independence and reject help as a means of exerting control. If we understand resistance as a way to “take arms against a sea of troubles,” then we can accept there may be pros and cons to our parents’ stubbornness.

The idea that a crisis may prompt our parent to ultimately accept help is a grim reality for some. But offering choices and ceding a little control along the way may help break down walls of resistance.

If your mother needs a caregiver, include her in the hiring process. If you’re concerned about driving, discuss alternative means of transportation. If your father refuses to leave his home, look into the feasibility and costs of home modification.

Taking an Indirect Approach

Sometimes, an indirect approach is better than a frontal assault.

For example, the Bourne family’s solution to their father’s resistance was to lose the term caregiver. Cliff Bourne had dementia and was getting to the point where he needed — but adamantly refused — a paid caregiver. A retired CEO, Cliff was used to being in charge and not accustomed to relinquishing control. But when he urinated in the closet instead of the bathroom, his kids knew they had to act. So they came up with the idea of hiring a part-time “assistant.”

The assistant would prepare meals, take Cliff on walks, do a little laundry, and help out around the house. Over time, the assistant won Cliff’s trust and was able to increase her hours and perform personal care-related tasks with skill and compassion.

If, despite your best efforts, your parent won’t budge, you may need professional help. Aging life care professionals, elder law attorneys, and professional mediators can provide an objective perspective about financial and legal matters and lay out options for care. They may also dislodge entrenched parents from unreasonable and unsustainable positions that put themselves and others at risk.

Somehow, you must find common ground —not just with your parents, but sometimes with your siblings too.

Jody Gastfriend, is vice president of senior care at Care.com and author of My Parent's Keeper. She is a licensed clinical social worker with more than 25 years of experience in elder care, and helped manage the care of her own parent with dementia for more than a decade. She has also been director of the Department of Social Services and Case Management at Lawrence Memorial Hospital in Massachusetts and clinical supervisor in the Social Service Department of Massachusetts General Hospital. Gastfriend is a featured senior care expert on NBC and Fox News and a regular contributor to The Huffington Post. She has also written for USA Today.

Advice from a Care.com vp, the author of 'My Parent's Keeper'

(Excerpted from My Parent’s Keeper: The Guilt, Grief, Guesswork, and Unexpected Gifts of Caregiving  by Jody Gastfriend. Copyright © 2018 by Jody Gastfriend. Excerpted by permission of Yale University Press. All rights reserved.)

Providing caregiving for your parent is a profound life-altering shift of roles that requires balancing the right to self-determination with the recognition that your mother and father need help. One of the biggest frustrations for adult children is that they come up with a plan that makes perfect sense to them but their parent says, “Thanks but no thanks.”

When our parents’ refusal to accept help puts their safety and well-being in jeopardy, we feel compelled to act, yet our good intentions are often thwarted. Over the years, I have heard countless stories of caregivers who tried strong-arming their parent to accept help — only to feel angry and dismayed when their efforts failed.

When a Parent Refuses Caregiving Help

For some sons and daughters, getting your parent to accept help may require more than just strategy, patience and a plan. It may take a crisis.

Take the case of Rachel and her mother Sally. At 88, Sally insisted she was safe driving despite evidence to the contrary. When Sally had to stop driving, due to flunking a driving assessment, she was devastated. But she was also willing to consider outside help. And there was the opening.

Rachel persuaded her mother to hire a professional caregiver, who assumed the roles of chauffeur, housekeeper and companion. Rachel breathed a sigh of relief.

What can adult children do when their parent refuses help? We can work with them — as much as possible — and not against them. We can empathize with their fears and not take their resistance personally.

But that doesn’t mean we accept any behavior, no matter how problematic and risky, and allow ourselves to be whipsawed and trodden upon, like a caregiving doormat.


’I Don’t Need More Help’

“I’ve got daughters. So I don’t need more help,” explained Ed, a strong-willed 85-year-old with type 2 diabetes that was spiraling out of control. “He’s got a hard- headed thing going on,” Jan said of her stepfather.

In the months after Jan’s mother died, Ed’s health markedly declined. Ed grew more confused, driving around not knowing where he was and frequently forgetting to take his insulin. When his blood sugar spiked to a dangerous degree, Ed refused to go the hospital. Jan, upset and alarmed, pleaded with her stepfather and eventually called 911 against his wishes.

Since Jan was unmarried, she was the daughter designated to take it all on. After leaving her temp job to be a full-time caretaker, Jan could no longer afford her apartment. So she moved in with Ed and braced herself for the rough road ahead.

First, Ed spent a week in the hospital and had two toes amputated. Then he was discharged home with infected ulcers. Despite all of Jan’s efforts, the ulcers worsened and Ed’s leg had to be amputated. Although Ed was able to put on his own prosthetic, he refused to do so and was confined to a wheelchair.

Compounding things further, Ed would not agree to an outdoor ramp, making movement in and out of the house a Herculean task. He was stuck — physically and emotionally. And so was Jan.

The wake-up call came from an unexpected source — Ed himself. Ed began to worry about Jan’s health and urged her to see a doctor. When Jan finally did, it was bad news. Jan too was diabetic. It was time to get more help and learn to say no.

Finding Workable Solutions

“I can’t do this on my own any longer.” Jan said to her sister. Rather than ask tentatively as she had done in the past, Jan explained matter-of-factly what she needed: help on evenings and weekends with their father’s care.

Then Jan told Ed he didn’t have the choice to refuse the ramp — it was going to happen. Jan even found grant funding through the city department of planning to pay for the ramp installation.

“And when I was able to wheel him in and out of the house, he was happy about the ramp! I even got him to put on his prosthetic so he wouldn’t be stuck in the wheelchair all day,” said Jan.” I learned I could not always wait for my father to agree to everything.”

Understanding a Parent’s Resistance

Our parents, especially those with chronic illnesses, may fear losing their independence and reject help as a means of exerting control. If we understand resistance as a way to “take arms against a sea of troubles,” then we can accept there may be pros and cons to our parents’ stubbornness.

The idea that a crisis may prompt our parent to ultimately accept help is a grim reality for some. But offering choices and ceding a little control along the way may help break down walls of resistance.

If your mother needs a caregiver, include her in the hiring process. If you’re concerned about driving, discuss alternative means of transportation. If your father refuses to leave his home, look into the feasibility and costs of home modification.

Taking an Indirect Approach

Sometimes, an indirect approach is better than a frontal assault.

For example, the Bourne family’s solution to their father’s resistance was to lose the term caregiver. Cliff Bourne had dementia and was getting to the point where he needed — but adamantly refused — a paid caregiver. A retired CEO, Cliff was used to being in charge and not accustomed to relinquishing control. But when he urinated in the closet instead of the bathroom, his kids knew they had to act. So they came up with the idea of hiring a part-time “assistant.”

The assistant would prepare meals, take Cliff on walks, do a little laundry, and help out around the house. Over time, the assistant won Cliff’s trust and was able to increase her hours and perform personal care-related tasks with skill and compassion.

If, despite your best efforts, your parent won’t budge, you may need professional help. Aging life care professionals, elder law attorneys, and professional mediators can provide an objective perspective about financial and legal matters and lay out options for care. They may also dislodge entrenched parents from unreasonable and unsustainable positions that put themselves and others at risk.

Somehow, you must find common ground —not just with your parents, but sometimes with your siblings too.

Jody Gastfriend, is vice president of senior care at Care.com and author of My Parent's Keeper. She is a licensed clinical social worker with more than 25 years of experience in elder care, and helped manage the care of her own parent with dementia for more than a decade. She has also been director of the Department of Social Services and Case Management at Lawrence Memorial Hospital in Massachusetts and clinical supervisor in the Social Service Department of Massachusetts General Hospital. Gastfriend is a featured senior care expert on NBC and Fox News and a regular contributor to The Huffington Post. She has also written for USA Today.

Throughout the month of May, Presbyterian SeniorCare Network will be embracing the Engage at Every Age theme and will utilize the power of Facebook to publicize our inspiring resident and team member stories. We’ll keep the buzz going all month, so be sure to check Facebook often and be sure to share our posts with your friends and family!

Each May, the Administration for Community Living leads our nation’s celebration of Older Americans Month. The theme for 2018 is Engage at Every Age. This powerful theme emphasizes that you are never too old (or young) to take part in activities that can enrich your physical, mental, and emotional well-being. Participating in activities that promote mental and physical wellness, offering your wisdom and experience to the next generation, seeking the mentorship of someone with more life experience than you—those are just a few examples of what being engaged can mean.

No matter where you are in your life, there is no better time than now to start!

Throughout the month of May, Presbyterian SeniorCare Network will be embracing the Engage at Every Age theme and will utilize the power of Facebook to publicize our inspiring resident and team member stories. We’ll keep the buzz going all month, so be sure to check Facebook often and be sure to share our posts with your friends and family!

Each May, the Administration for Community Living leads our nation’s celebration of Older Americans Month. The theme for 2018 is Engage at Every Age. This powerful theme emphasizes that you are never too old (or young) to take part in activities that can enrich your physical, mental, and emotional well-being. Participating in activities that promote mental and physical wellness, offering your wisdom and experience to the next generation, seeking the mentorship of someone with more life experience than you—those are just a few examples of what being engaged can mean.

No matter where you are in your life, there is no better time than now to start!

Cautionary words from a Next Avenue Influencer In Aging

By Sudipto Banerjee for Next Avenue

(Editor’s Note: This article is part of Next Avenue’s 2015 Influencers in Aging project honoring 50 people changing how we age and think about aging.)

There are many uncertainties in retirement. For example, we don’t know how long we are going to live, what the interest rates will be or how the stock market will behave. But one thing is nearly certain: our health will decline as we age.

That means at some point, most of us will face serious functional limitations and, in the event of serious health shocks, maybe even permanent disability. As a result, a large number of older Americans might require professional medical care at home or in institutions such as nursing homes. But there is a lack of awareness about the risk of long-term care because of two big misconceptions surrounding the topic.

Misconception No. 1: Very few people end up using long-term care. This study by researchers from the National Bureau of Economic Research estimates that a 50-year-old has a 53 to 59 percent chance of entering a nursing home during his or her lifetime.

In a recent study by the Employee Benefit Research Institute (EBRI), where I work, we found that between 2010 and 2012, nearly a quarter (23 percent) of those at or above age 85 recorded overnight stays in a nursing home facility. This number may not seem too high, but it is only for those who survived the entire two-year period of the study. When we analyzed the sample of only those who died during the same two-year period, the corresponding number was 62 percent.

Misconception No. 2: Medicare pays for all long-term care needs. Medicare covers some part of nursing-home expenses up to 100 days, but only in a skilled nursing facility and the nursing-home stay must be preceded by a qualifying hospital stay of more than three consecutive days.

Custodial care (nonmedical assistance, typically for activities of daily living such as bathing, eating and dressing), which is the most common form of long-term care provided by nursing homes, is not covered by Medicare.

Medicaid pays for such care, but families typically must exhaust nearly all of their income and assets to qualify. As a result, Medicaid is the long-term care coverage of last resort for those with no assets.

The High Cost of Long-Term Care

The truth is, long-term care is very expensive. According to a John Hancock national study of long-term care costs, in 2013, the average annual cost of care in the U.S. was $94,170 for a private room in a nursing home ($82,855 for a semi-private room); $41,124 for an assisted living facility and $18,460 for adult day care. The average annual cost of care received at home was approximately $29,640.

In the EBRI study mentioned above, during the two-year period examined, households with a member aged 85 or above spent an average of $24,185 out-of-pocket for long-term care expenses. But the households in the top 10 percent of nursing-home spending spent more than $66,600.

Long-term care costs are probably most concerning for middle-income households. High-income households may be able to self-insure and low- income households may not have enough assets to protect, so Medicaid will likely cover their expenses.

According to EBRI’s Retirement Security Projection Model predictions, 89 percent of households in the second-income quartile will not run short of money in retirement if these unpredictable health care costs are ignored. However, if these costs are included, only 42 percent of households in that income group won’t run short of money, based on projections.

Planning to Buy Protection

A possible solution for those who want to protect their assets from the risk of the costs of long-term care: long-term care insurance.

Premiums for this coverage vary depending on factors such as the age when the policy is bought, the extent of the coverage, the waiting period before benefits begin, inflation protection and where you live. But they can be expensive.

So, future retirees need to plan carefully if they want the protection of long-term care insurance.

© Twin Cities Public Television - 2016. All rights reserved.

Cautionary words from a Next Avenue Influencer In Aging

By Sudipto Banerjee for Next Avenue

(Editor’s Note: This article is part of Next Avenue’s 2015 Influencers in Aging project honoring 50 people changing how we age and think about aging.)

There are many uncertainties in retirement. For example, we don’t know how long we are going to live, what the interest rates will be or how the stock market will behave. But one thing is nearly certain: our health will decline as we age.

That means at some point, most of us will face serious functional limitations and, in the event of serious health shocks, maybe even permanent disability. As a result, a large number of older Americans might require professional medical care at home or in institutions such as nursing homes. But there is a lack of awareness about the risk of long-term care because of two big misconceptions surrounding the topic.

Misconception No. 1: Very few people end up using long-term care. This study by researchers from the National Bureau of Economic Research estimates that a 50-year-old has a 53 to 59 percent chance of entering a nursing home during his or her lifetime.

In a recent study by the Employee Benefit Research Institute (EBRI), where I work, we found that between 2010 and 2012, nearly a quarter (23 percent) of those at or above age 85 recorded overnight stays in a nursing home facility. This number may not seem too high, but it is only for those who survived the entire two-year period of the study. When we analyzed the sample of only those who died during the same two-year period, the corresponding number was 62 percent.

Misconception No. 2: Medicare pays for all long-term care needs. Medicare covers some part of nursing-home expenses up to 100 days, but only in a skilled nursing facility and the nursing-home stay must be preceded by a qualifying hospital stay of more than three consecutive days.

Custodial care (nonmedical assistance, typically for activities of daily living such as bathing, eating and dressing), which is the most common form of long-term care provided by nursing homes, is not covered by Medicare.

Medicaid pays for such care, but families typically must exhaust nearly all of their income and assets to qualify. As a result, Medicaid is the long-term care coverage of last resort for those with no assets.

The High Cost of Long-Term Care

The truth is, long-term care is very expensive. According to a John Hancock national study of long-term care costs, in 2013, the average annual cost of care in the U.S. was $94,170 for a private room in a nursing home ($82,855 for a semi-private room); $41,124 for an assisted living facility and $18,460 for adult day care. The average annual cost of care received at home was approximately $29,640.

In the EBRI study mentioned above, during the two-year period examined, households with a member aged 85 or above spent an average of $24,185 out-of-pocket for long-term care expenses. But the households in the top 10 percent of nursing-home spending spent more than $66,600.

Long-term care costs are probably most concerning for middle-income households. High-income households may be able to self-insure and low- income households may not have enough assets to protect, so Medicaid will likely cover their expenses.

According to EBRI’s Retirement Security Projection Model predictions, 89 percent of households in the second-income quartile will not run short of money in retirement if these unpredictable health care costs are ignored. However, if these costs are included, only 42 percent of households in that income group won’t run short of money, based on projections.

Planning to Buy Protection

A possible solution for those who want to protect their assets from the risk of the costs of long-term care: long-term care insurance.

Premiums for this coverage vary depending on factors such as the age when the policy is bought, the extent of the coverage, the waiting period before benefits begin, inflation protection and where you live. But they can be expensive.

So, future retirees need to plan carefully if they want the protection of long-term care insurance.

© Twin Cities Public Television - 2016. All rights reserved.