This article for families visiting relatives with dementia in long-term care appears as a guest post on Deborah Shouse Writes where Deborah Shouse, author of Love in the Land of Dementia, offers advice and support for families along their caregiving journey.
It wasn’t just an ordinary visit. I walked into the long-term care facility and made my way to the memory care unit. I paused in front of the locked door, pulled a crumpled scrap of paper out of my pocket and tapped the entry code into the keypad. As I walked to my mother’s room, her new home, I felt sad, confused and guilty. How was I going to connect with my mom in this strange new environment?
Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide, has 16 years of experience as a psychologist in long-term care and understands the emotions and confusions family or friends might feel when visiting in a long-term care facility. Here are her tips for having a meaningful connection.
Seven Tips for Visiting a Loved One in a Long-Term Care Facility
Many families find it stressful to visit their loved ones in long-term care, especially if dementia has changed their usual ways of relating. Here are seven ways to make the most of your visits:
Help the room feel like home by bringing photos and bedspreads, creating an environment that feels more comfortable and familiar to your relative and more pleasant for you to visit. Labeling the photos with names (such as “Oldest son, Sam”) provides reminders in your absence and clues for the staff that are with your loved one daily.
Turn off the television or radio and close the door during your time together. When the room is quiet and free of distractions, it’s easier for someone with dementia (and for those with hearing loss) to focus on their visitors.
Here’s my latest article at McKnight’s Long-Term Care News:
5 lessons long-term care providers can learn from Joan Lunden
Award-winning journalist and author Joan Lunden and I met recently to talk about eldercare issues. Joan’s mother is 94 years old and happy in a small care home after living for years in the community with home care.
Joan, a physician’s daughter, talks with family caregivers around the country as part of her mission to educate people about the challenges of eldercare.
The observations she shared in our conversation deserve attention from LTC providers looking to meet the needs of residents and their families. As a spokeswoman for family caregivers, her experience echoes that of millions of families across the country.
1. Help people choose the right level of care for their loved one.
The small care home was the third placement for Joan’s mother once she could no longer live in the community.
Lunden: When I finally moved my mother into a facility, I moved her into a place that would have been great for my mother 10 years ago. I moved the mother that was in my head. In reality, the beautiful dining room scared her because she didn’t recognize people, she was alone in her apartment when she started sundowning. The place terrified her. I had chosen the completely wrong facility.
As LTC providers, who recognize the toll it takes on elders and their family members to move from facility to facility, we can do more to help families find a placement that meets the needs of their loved one.
We can strive to provide the family with a realistic assessment of needs and what a facility can offer.
We can refer residents to other levels of care within our systems.
We can build relationships with other facilities so that we refer potential residents to each other.
2. Assist families with the transition to parenting their parent
Joan points out that shifting the roles in the family can be very challenging.
Lunden: When you get to that life transition when you become the parent to your parent, it doesn’t feel natural because you’ve spent a lifetime learning to be a child to them and they have always been in that parental position. To all of a sudden have that role reversed is very disconcerting to a lot of people. It’s a hard one to accept. It often feels uncomfortable to tell your parent what they can do or can’t do.
Some families come to us having negotiated the shift in roles for years, but more often we find adult children and their loved ones struggling to find a way to handle dramatic role changes in the midst of a health crisis.
We can assist families with the role transition when we:
Offer family education groups.
Refer to counseling resources in the community.
Recommend written resources such as David Solie’s book, “How to Say It to Seniors” which focuses on the communication challenges between adult children and their aging parents.
Use our consulting psychologists to help the team with challenging family issues.
3. Provide an opportunity for staff to take a break
Joan offers a place for caregivers to recharge through her Camp Reveille.
Award-winning journalist and author Joan Lunden takes time from her busy schedule to talk with Dr. El of My Better Nursing Home about her experiences caring for her 94-year old mother and speaking with other family caregivers around the country.
Dr. El:Joan, you’re part of what’s called “The Sandwich Generation,” taking care of your young children and an aging parent while maintaining a high-profile career. How do you manage this?
JL: After working onGood Morning America for twenty years where you never know what part of the world you’re going to be in while raising 3 daughters, I don’t think anything could get any harder than that. But I think having kids the second time around, you have to decide what you’re like and are you physically and psychologically up to the task. I wasn’t even daunted about having a second round of children. But no matter what we do as women, running businesses and keeping hectic schedules, the day you start taking care of a parent, that can really bring you to your knees….When you get to that life transition when you become the parent to your parent, it doesn’t feel natural because you’ve spent a lifetime learning to be a child to them and they have always been in that parental position. All of the sudden to have that role reversed is very disconcerting to a lot of people. It’s a hard one to accept. It often feels uncomfortable to tell your parent what they can do or can’t do.
Dr. El:The caretaking you’re talking about can be quite stressful and I saw on your website you have a place called Camp Reveille. Can you tell me about that?
JL: I got remarried and I married a guy who runs summer camps for children. I’m no dummy, I married a guy with a 50-foot climbing wall and 17 tennis courts! I started spending my summers up in Maine with him and at the end of every summer I would find that I was my least stressed, my absolute most fit, I was one with nature again….One day we were walking by the lake and I said to my husband, “I’m always talking to these women’s groups all over the nation. I should have a summer camp for women.” And my husband said, “The facility is yours. Do it.” And the next summer we ran our first Camp Reveille, which is a 3-night, 4-day stay because women don’t have wives and can only deal with being away for that amount of time. That’s long enough to unhook from electronics, unwind from the hectic pace of life…and connect with the women….The emotional strength that comes from getting a group of 150 women together is really powerful. The sharing of stories, the understanding that you’re going to get to the other side [of what you’re going through], learning from each other, motivating each other in a safe environment. They go back not just refreshed, but I feel a lot of them experience a transformation and are able to let go of a lot of baggage they didn’t even know they were carrying around.
Dr. El:Is the camp mostly for family caregivers or is it also for professional caregivers?
JL: It’s for women in general. About 75% of the women identified themselves [in their pre-camp questionnaires] as caregivers. Several women had just lost their husbands and came to the camp with their hospice workers. I never have seen such a transformation as these two women [a widow and her hospice worker] who came in and when they left on the last day I almost didn’t recognize them because they had let go of so much stress and heartache that they were like two giddy little girls, laughing.
Dr. El:For most families, one of the stresses of eldercare involves the financial challenges, including medication costs. What are your thoughts on how to manage this?
JL: I do a lot of health campaigns and I’m a doctor’s kid who always thought I’d grow up to be a doctor until I worked in a hospital and found out that scalpels were not happening in my career. But truly the dissemination of health information and the ability to help people make better decisions is at my core. I’m working right now with Walgreens who has really made great strides in trying to figure out ways to bring prescription costs down. One of the ways is Medicare Part D. The real area that it seems people can get some savings is that a lot of these programs that you have to sign up in when you sign up for Medicare Part D are now affiliating themselves with pharmaceutical chains. When they do that, you need to review your plan and ask if there is a preferred pharmacy network so you can get the lowest copays.
Dr. El: This is an important issue because sometimes people will skip their medication because they can’t afford it and this leads to a whole host of problems and readmissions to the hospital and nursing home.
JL: That’s what this Walgreens survey found, that one in five people were skipping doses to make a prescription last longer or not getting them refilled. And one in four said that when a doctor wrote a prescription for them, they never got it filled. Nonadherence to medication therapy is estimated to cost the healthcare system 300 billion dollars a year…. I don’t know how we’re going to reform healthcare in this country unless we do it grassroots, person by person, just like we got people to stop smoking. It’s a huge educational process to help seniors and caregivers understand how they can get the most cost savings from these plans that they belong to.
Dr. El: Let’s talk a little bit about your personal situation. Your mother is in a care facility right now. Can you tell me about how you chose that place and what it’s like there?
JL: I had kept my mom and my brother in a condo together and had a person come in to help them. My brother had Type II Diabetes and he had all the complications one could have with it and he was unable to keep a job for several decades, so I paid for them. The condo worked pretty well until my brother died about 6 or 7 years ago and it became abundantly clear to me that there was no way my mother at 88 years old could continue to live in that condo by herself. And that is one of the toughest things, when I talk to people, making that decision that their parents need to move out of their house or apartment and into a care facility. And I think that part of the reason is that we’re living with this myth that the minute you leave your house and move into a nursing home, you die, and that’s absolutely not the way it works, at least from what I’ve seen.
Dr. El:I work in nursing homes and it’s not what I’ve seen either.
JL: When you leave a place, hopefully you make that decision before it’s a crisis, but most people wait until somebody’s had a fall or has an accident in the car or wait for the crisis call. Once you move your loved one into a facility, I’ve found they’re often better off instead of being by themselves in their house. I think if I’d have gotten my mother into senior living far sooner, she would have been much better off today because she would have had conversations with people. She became a recluse at home. When I finally moved my mother into a facility, I moved her into a place that would have been great for my mother ten years ago. I moved the mother that was in my head. In reality, the beautiful dining room scared her because she didn’t recognize people, she was alone in her apartment when she started sundowning….The place terrified her. I had chosen the completely wrong facility.
Dr. El:And how would you know because you’d never done this before.
JL: And not only that, I hadn’t been living with her. I was typical of many families in that I lived far away and when people come into town for a visit, everyone puts on their best face — there’s no problem, we’re doing fine. And you don’t realize that they haven’t opened the mail for the last two years. In retrospect, there were warning signs that my mother needed more help. I came back to Sacramento, California and moved her to the next place, but she kept falling. Her neurologist recommended a small care facility in a house setting with five residents. That was the best advice I ever got. She now lives in a ranch-style house that’s not at all institutional. She gets out of her room every day, they play bingo — she’s the reigning champ, she reads the newspaper to the other residents in their 90s and they do chair exercises. It’s fastidiously clean. It was the best move I ever made.
Dr. El: It’s so amazing when you find the right place because it changes your relationship from the worried, intense caregiving to I’m visiting my mom and we’re having a relationship like we used to have.
JL: Yes. Instead of spending the entire time in town figuring out what’s wrong, now I can go in — and my mom can have good days and bad days, she does have dementia — but I made up these books with photographs and she can sit and reconnect. The man who runs the place gave me the advice that the more you can engage with the older person in the life they knew, rather than trying to engage them in your life, the more comfortable they are and the better they begin to have a discussion with you. When I talk about what life was like when I was a little girl, my mother opens up like a flower.
Dr. El:You’re talking about flipping the roles of family members, and one of the chapters of my book, The Savvy Resident’s Guide, is for elders to help them see that they still have a role in parenting by helping their children adjust to the fact that they’re aging and dealing with end of life issues. Are there ways that your mom is still in the mom role with you?
JL: Not in any significant way other than that I still want her to like the way I dress, I dress for her when I go there. She still wants to feel the pride of a momma. They don’t want to know you won a certain award particularly, they want to know you’re happy. I’m in the child role in that I’m still trying to make sure that my momma is proud.
Dr. El: You speak with family caregivers all over the country. Is there anything you’d like to say to professional caregivers on behalf of the families?
JL: Thank you, thank you, thank you, thank you! I take my hat off to those people who work as caregivers. It is a testament to their compassion and their patience. I can go to sleep at night because I know the heart of these women who are taking care of my mom all day long… I thank God that we have those people in our society that are willing to dedicate themselves truly to someone else’s minute-by-minute happiness.
Here’s my latest article at McKnight’s Long-Term Care News:
Absenteeism and turnover in LTC? Death anxiety could be the cause
I started working in long-term care when I was in my early 30s and I was shocked at first when the residents died. I was used to falling in love with my patients — I consider it a prerequisite for psychotherapy. I wasn’t used to them dying on me.
In the years since, I’ve lost many, many people who have touched my heart, but I can still remember very clearly the ones who passed when I was new. In order to make it in LTC, I’ve protected myself by falling in love in a different way.
A recent New York Times article, “Is Giving The Secret of Getting Ahead?”, piqued my interest when it touched on the impact of death anxiety at work, suggesting that it could have an effect on absenteeism and turnover. Working with residents in LTC is all about coping with death, and facilities have huge problems with absenteeism and turnover —surely there was a connection. I raced through the article, located the research paper it mentioned, “The Hot and Cool of Death Awareness at Work,” and plowed through that too. What I read seemed very applicable to long-term care, so I’m going to present the gist of the research and ways to reduce absenteeism and turnover based on these ideas.
Mortality cues
In “The Hot and Cool of Death Awareness at Work,” authors Grant and Wade-Benzoni outline different types of work where mortality cues can be chronic or acute, internal or external to the job, and personal or vicarious. A firefighter, for example, is constantly in a work situation that threatens his life. This would be considered a chronic, internal, personal mortality cue. A nursing home employee would have a chronic, internal, vicarious mortality cue because they are repeatedly exposed to other people at work who are dealing with end-of-life issues.
Reactions to mortality cues
The authors state that there are two different reactions to being aware of death at work. A “hot” reaction leads to self-protection and “stress-related withdrawal behaviors” such as absenteeism, tardiness, and turnover. A “cool” reaction leads to prosocial behaviors such as helping, mentoring, and thinking of work in the context of contributing to society. They refer to the hot reaction as “death anxiety” and the cool reaction as “death reflection” and note that chronic exposure to mortality cues can shift a worker from death anxiety to death reflection.
This shift from death anxiety to death reflection describes my experience as I continued in long-term care. It also explains why some new workers bail out early and others persevere to become beacons of light in a challenging environment. In addition, the researchers propose that as we age, we become more likely to experience death reflection rather than anxiety. Younger workers, therefore, are more likely to withdraw from the nursing home environment.
Coping with Grief, for Staff Members: Conversation with grief expert Courtney Armstrong, LPC
Beloved residents decline and then die, their families stop visiting the nursing home — coming to terms with these losses is an unacknowledged challenge of our work. Especially helpful for training directors, new employees, or those struggling with a current loss either on or off the job, this 20-minute audio will help staff members:
Understand their feelings
Recognize symptoms of grief
Identify coping skills
Assist each other in creating a supportive community
Includes FREE:
Signs of Grief checklist
LovingKindness Meditation Sign suitable for posting at the nursing station
I have great respect for those who attend to the often complicated physical needs of our long-term care residents, but if your facility doesn’t have a solid social service department, it isn’t as good as it could be. Yes, the medical care is vital, but the social service department addresses many of the issues essential to resident satisfaction.
Market researcher Margaret A. Wylde, PhD, notes that the three most important elements of satisfaction with a long-term care community are the friendliness of staff, the degree to which residents feel the community is their home, and the opportunity they have to stay connected with the rest of the world.
In her 2010 McKnight’s Online Expo talk, she stated that it’s very satisfied residents who refer others to their communities.
Consider the multitude of tasks the average social worker performs:
· Helps the resident settle into the facility
· Handles roommates conflicts
· Facilitates room changes
· Assists with the purchase of new clothing
· Locates or arranges for reimbursement of lost clothing
“Thanks, Doc, for telling me about this group!” Mr. Jones smiled and held up the magazine he’d gotten from the National Parkinson Foundation. “Except for that actor, I didn’t even know one person with Parkinson’s before I got my diagnosis—now I find out there are enough of them to have a whole Foundation!”“You feel better knowing you’re not alone,” the psychologist reflected.“Not only that,” he said, “but I’m learning a lot about Parkinson’s and how to handle it. I used to get so angry when I couldn’t do the things I used to do, but now I see it’s my illness. I’m gonna figure out how to deal with it,” he said with conviction.Like Mr. Jones, many residents enter long-term care with medical illnesses that are unfamiliar to them, sometimes years after their diagnoses. As discussed in the article 5 Reasons to Educate Residents About Their Illnesses, not only are properly educated residents more compliant with healthcare recommendations, but the coming baby boomers are going to demand information about their illnesses. Nursing homes that provide education for residents (and families) will be offering cutting-edge services that enhance the experience of their facilities and increase customer satisfaction.Here are seven simple methods to educate residents that are easy to implement and will help your facility stand apart from the crowd:
Encourage discussion with medical staff upon admission and diagnosis. Part of the initial assessment of new residents should include asking them whether or not they know what their diagnoses are. Nurses and doctors can offer a brief explanation of unfamiliar terms and assess the need for more information, the length of time since diagnosis (the more recent the diagnosis, the more likely the resident will be in emotional distress and may benefit from mental health support), and the level of family involvement (involved family may need information too). Any new diagnoses after admission should be discussed with the physician and followed up as needed.
Dispense fact sheets about illnesses. Every illness is Google-able. Chances are that your boomer residents and/or their family members will be researching their illnesses on their smartphones or laptops, but the details they’re obtaining may not be from reputable sources. By providing information from established medical sites, staff can direct residents to credible resources. The staff members also will have easy access to the information and can familiarize themselves with the illnesses and required care. Fact sheets could be in a binder available at the nursing stations for the staff to distribute or in a magazine rack accessible to the residents and visitors.
Provide information about illness organizations and how they can join. Along with the basic details an illness fact sheet provides, residents can be offered information about disease-specific organizations. The mere knowledge of the existence of such groups can be helpful, since many residents feel alone with their illnesses, despite the fact that they may be sitting in the hallway next to another resident with the same disease. Privacy laws prevent staff members from sharing such similarities, and residents might not feel comfortable discussing their physical concerns with a neighbor on their floor. Illness-related societies can offer support, coping strategies, hope and perspectives that others are unable to provide. Joining such organizations can be an important step in regaining a sense of control over one’s life.
There’s a new dramatic series on aging parents and their adult children on YouTube. These brief vignettes, with 13 episodes in all, capture issues facing families as parents become less able to care for themselves and their children try to intervene/help. I saw the first one and thought it was very powerful.
Here’s my latest article in Long-Term Living Magazine online:
5 reasons to educate residents about their illnesses
“How long have you had Parkinson’s?” the psychologist asked Mr. Jones during his initial evaluation.
“They just told me the diagnosis when I got here last week, but I suppose I’ve had it for a while.” He said it casually, but his hands were clenched and his voice held a note of tension.
“Did the doctor explain what it is or give you information about the Parkinson’s Foundation?”
“No. All I know is that it’s the same disease that young actor has—what’s his name?”
“Michael J. Fox.”
“Yeah, that’s the one.”
The psychologist assured the resident she’d bring him a pamphlet from the Parkinson’s Foundation the following week. It would work better, she thought to herself, if the medical staff provided the physical health information so she could follow up with the mental health aspects.
Residents often enter long-term care with surprisingly little knowledge about their conditions, whether they have a recent diagnosis or have been living with an illness for many years. This lack of information isn’t good for residents, families or facility staff.
Here are five reasons why we should teach our residents about the illnesses they live with:
1. Education leads to more active resident involvement in care.
When residents have information about their illnesses, they are more able to accurately report their symptoms to the medical team and to provide the type of information that improves treatment. A resident without knowledge is a passive recipient of medication and care; a resident with knowledge can partner with his or her medical team to address needs and find effective solutions. Joan, for instance, had multiple sclerosis and was keenly aware that the hot summer made it difficult for her to walk in rehab. She was able to work with her therapist to find more manageable activities so that she could continue with her rehab program during the summer months. Contrast this with Leon, who blamed himself for his MS symptoms, believed his difficulty walking was a personal failure, and was referred for psychotherapy when he stopped attending rehab. With encouragement and some psychoeducation about his illness, Leon was literally able to get back on his feet again.
2. Knowledge increases compliance.
Uneducated individuals are less likely to comply with treatment recommendations or may reject medications due to side effects without fully considering potential benefits. Individuals who understand why particular medications are given and how to cope with potential side effects are more likely to comply with treatment. They’re also more likely to have reasonable, informed objections for foregoing a particular course of treatment—reasons that can be readily understood and documented. For example, Lucille was initially resistant to the dialysis treatments that were recommended for her. Once she gathered information and spoke to some other residents in the dialysis program, she ultimately decided that its life-saving benefits were worth the time and discomfort of the treatments. Thomas, on the other hand, decided against dialysis and was able to explain and document his end-of-life wishes clearly, based on his knowledge of his illness.
“How in the world am I going to chart this?” I wondered as I sat across from Nell, who filled her large wheelchair to overflowing. This was our second attempt at psychotherapy, which I’d discontinued a few months ago because I felt all my efforts had gone nowhere. Nell sat in her room all day, doing nothing and talking to no one, yet she was clear in her thinking and clearly depressed. She resisted all of my suggestions, recommendations, cajoling, begging, humor, and coordination with the team to adjust her medications. Efforts to connect her with her estranged family had produced a tepid response. “She’s been this way all her life,” her son told me when I’d finally called to tell him I’d stopped seeing his mom. “I’ve given up,” he added.
Now here I was, three sessions after the team had referred her for psychological services again, trying to determine a treatment strategy in the face of her extreme hopelessness.
“There’s nothing I can do,” she said, “because I can’t see.”
Her talking clock, talking watch, talking books, radio, and TV sat unused after her initial training in how to operate them.
__________________
I consulted with colleagues the next week and they encouraged me to keep going. “You’re the only person she talks to,” they said. “That has value.”
__________________
A couple of weeks later I ran into Nell’s aide in the elevator after I’d finished a staff training.
“You know she asks for you all the time, don’t you?” she said.
“She does?” I was shocked.
“You’re Eleanor, right?”
“Yes.”
“She calls ‘Eleanor, Eleanor, Eleanor’ all day long. And when she doesn’t want to take a shower, we tell her ‘Eleanor wants you to do it’ and then she goes along with it.”
“I had no idea! Thank you for telling me that.” I was flabbergasted — and relieved that my documentation could reflect some actual purpose and progress.
___________________
The next week I sat across from Nell with a lighter spirit.
“There’s nothing I can do,” she said, “now that I’ve lost my eyesight.”
Here’s my latest article in Long-Term Living magazine online:
Family members: 5 ways to turn fault finders into fans
For most families, entry into a nursing home is like being teleported onto a strange new planet. The arrival is often swift and unanticipated, and the customs are foreign and frequently unnerving. Think back to your first days in long-term care, subtract your training, add a sick loved one and consider from that vantage point what services you can offer to improve the experience of anxious family members. Here are five ideas to get you started:
1. Provide essential information up front.
Your admissions packet probably includes the basics already, such as a copy of the residents’ rights and information on how to finance a nursing home stay and how to file a grievance. Consider going beyond the essentials to provide helpful details such as the names of the nurses, aides, doctors and social workers, and the fact that, for example, nurses wear white and aides wear blue and what the difference is in their roles in the facility. Anticipate the need for other information such as the location of the business office or how the discharge process works.
2. Offer emotional support via family meetings.
Nursing home entry is an extremely stressful event in the life of a family. Family members may consider nursing home placement to be “the beginning of the end” and be experiencing anticipatory grief as they look toward losing their loved one, even though the loss might be many years away. Most families are negotiating the added life tasks of trying to decide what’s best for Mom and perhaps selling a home or dispersing a lifetime of possessions. Family disagreements are common. Nursing homes that offer supportive and informative sessions run by the social worker or psychologist, with community referrals as needed, are more likely to be viewed with gratitude for meeting this unspoken need than to become targets of misplace anxiety and rage. Examples of meeting topics could include “understanding dementia,” “supporting your loved one during nursing home placement” and “coping with changing family dynamics.” In addition, offering information on illnesses such diabetes, provided by a knowledgeable staff member or by a local representative of an organization such as the American Diabetes Association, can improve the compliance of families with residents’ special diets and reduce conflict with staff (and residents) around this issue.
Beloved residents decline and then die, their families stop visiting the nursing home — coming to terms with these losses is an unacknowledged challenge of our work. Especially helpful for training directors, new employees, or those struggling with a current loss either on or off the job, this 20-minute audio will help staff members:
Here’s my latest article on Long-Term Living magazine online:
