Care consultations help families avoid getting lost in the maze of payment options for elder care.
This blog series illustrate the ways a care consultation can save families money, time and trouble. These stories are drawn from our experience with families and their elders: identifying information has been changed.
Paying for elder care is like making one’s way through a maze. In a maze, you can backtrack and take a different turn and it will only cost you time. In elder care, the wrong move can be very costly.
Annie’s Mother was diagnosed with cancer and needed treatment. Following treatment, she was sent to a rehabilitation facility and then went home with help. All went well until she fell. The paid staff found her on the floor and sent her to hospital. Annie arrived to find her Mother in the ER. Tests showed she was dehydrated, poorly nourished and had not taken all of her medications.
The hospital was overcrowded and so was the ER. Mother didn’t even get a room in the ER for 24 hours. The staff began treatments and Mother improved. Rather than sending her home, Annie decided it would be better to return her Mother to the rehabilitation facility. Annie also considered moving her Mother so she would not live alone to avoid future problems. This was especially important because Annie’s job took her all over the state. In an emergency, she might not return quickly.
Annie didn’t review her Mother’s Medicare coverage. Mother had only been in the ER under observation. She had never been admitted to the hospital. Medicare covered many parts of her ER treatment. If her Mother had been admitted and had stayed long enough in hospital, she would have qualified for rehabilitation: she didn’t. Annie received the Medicare determination letter several weeks later: not covered. Annie returned her mother home, with more help, medication supervision, and more worry while she was on the road. She had to pay $18,000 to cover that stay. Consultations don’t cost, they pay.
This blog series illustrates the ways a care consultation can save families money, time and trouble. These stories are drawn from our experience with actual families and their elders: identifying information has been changed.
Consultations help avoid mistakes; like ordered work boots but getting pink shoes with 4 inch heels
Mike emailed me about a consultation and left his phone number; I called. “It’s about my Dad, he’s been losing it since my Mom died”, Mike said.
I asked what he meant by, ”losing it”. Mike described his father’s problems with paying bills, keeping his place clean, and forgetting to take medicine. I explained how our consultations worked.
“I just want to know which nursing home to put my Dad in!” he exclaimed.
His tone seemed irritated. I explained that there were many kinds of care, some were covered by Medicare or Medicaid and some were not. Consultation is about taking various measurements and to find the right fit.
Let me show you why I can’t just give you the name of a nursing home, I explained. Suppose you ordered a pair of shoes. When you opened the box, you found a pair of pink, 4-inch heels. Would those work for you? Before anyone buys shoes, we learn our shoe size and decide how we will use them; for socializing or construction work. We know this because we have purchased shoes before. Care consultations help families gather the right measurements so elder care fits their needs.
Getting the right care for someone is usually a first-time experience for families. There are many kinds of care and different ways to pay for it. It’s as important to take measurements in your Father’s case as it is to get the right shoe size. It’s as important to learn if his condition might improve or if he is unlikely to improve. It’s really important to look at how his care will be paid. I can help you get those measurements and prepare you for the process. Our consultation cost is a fraction of the cost of care. You could return the pink, 4-inch heels for a refund: you can’t get a refund on elder care.
My youngest sister had struggled with cancer since 2019. She passed away on January 28th 2022 @ 2:53pm.
Valentine’s Day was approaching but it was the last thing on my mind. I remembered that she had always sent me a Valentine; usually home made. She was the only member of my family who did. Many times I had told her she didn’t have to go to all that trouble but she did it anyway, year after year. This year would be different, there would be no Valentines.
Then our doorbell rang and my husband answered. All I could do was hear their conversation. Our caller was a little neighbor girl. The sound of her small voice reminded me of my sister. She presented us with some cookies and her hand-painted card. “I thought you would like these;” she said. We had never received a Valentine gift from them before. My husband handed the bag to me. I ate a cookie and cried; it was just like my sister used to make. This gift was “ordered” from beyond and arrived at my lowest point: one final Valentine. Love is stronger than death.
This event made me think about my work with caregivers. How does the process of caregiving’s end impact them? A caregiver, whose recipient dies, has a loss of role as well as a loss of a loved one. Society isn’t always helpful; “Why don’t you go out and celebrate your freedom?” [from caregiving] How would you respond when you’re in mourning?
Some people inquire about the caregiver’s next career move; “Are you going to go get a job?” Many caregivers have had to give up promotions, to preserve their caregiving role. They re-enter the workforce with a financial deficit. Caregivers need to re-enter the workforce but how and where? What skills do they need now? Where are the new jobs? Thus, former caregivers face a more uncertainly-funded retirement. Wouldn’t you feel lost when you realized that work-life, and former friends have moved on? Do these conditions make a former caregiver want to celebrate; or to wonder where to turn? (!)
Still, there is the ever-present grief. Some cultures weave that process into a ceremony. Ceremony helps in two ways, it commemorates and encapsulates. Commemoration seems obvious; like saying a prayer or lighting a candle. Encapsulation isn’t as obvious. Once the candle is lit or the prayer said; it’s done. Once a physical action expressed the emotions of the Caregiver its performance holds those feelings. Caregivers need to be honored and recognized for their loss as well their service. The emotion becomes action; as the action contains the emotion. Giving emotion a place and holding it, frees energy to devote to caregiver re-entry.
Paid caregiving staff would benefit from recognition as well. I attended a funeral for an elder who had full-time care at home. The family, wisely, invited the former care staff to the funeral and the meal-of-condolence afterwards. Family members introduced the staff to various mourners. That’s not only kind; it’s necessary. Paid staff can become attached to their elders. “They also serve who only stand in wait”* (on the elder). Would our society attract better caregiving staff if they knew they would be recognized for their service?
Transitions from caregiving require time, and money. That same family paid each staff member for two weeks in addition to their time at the funeral. Hooray! They need to find another job. How would one leap to a new job in 24 hours?
Former family caregivers find their service is considered “time-off” by employers! Really! Managing elder care takes skill and coordination; valuable traits. Getting the elder to cooperate with care is an art; like that of negotiation. It’s time to see caregiving as a valuable experience.
Family caregivers need the same things but there is no system for them. Military personnel, re-entering civil life, can get help with training, and support. These processes of loss, grief and rebuilding in caregivers goes unrecognized by society; leaving them isolated.
As the GIs returned from WWII, there was the 52-40 club. Each person got $40.00 for 52 weeks. There is no such program for former caregivers. Why not? Oh NO! Such a program would cost money! Family caregivers usually serve for free. They SAVE over $10 billion dollars for our society. If we had to fund that care, our country would be in serious trouble. If we had a caregiver re-entry program it would be a WIN, WIN, WIN.
First Win: We could incorporate already-existing social structure like churches, to incorporate caregiving recognition and support into their mission. Former caregivers could pass on their acquired wisdom to support new caregivers.
Second Win: Money spent on education for former caregivers pays off in better wages earned and more tax revenue for society
Third Win: Former caregivers, who are better able to recoup their lost earnings, would be less likely to require public assistance in their old age.
A former caregiver re-entry program wouldn’t cost, it would pay.
* A Tale of Two Cities, Charles Dickens
IMy perspective on Covid is drawn from an early childhood experience with Polio. I believe it holds the key to unwinding the political binding that is strangling our vaccination effort.
It was summer, school was out and my sister and I could hardly wait to play with our friends. I already knew there was a sickness that children got and it made them so they couldn’t run and play. That seemed like the end of the world to me! Every day the radio reported the latest number of children with Polio and the number of deaths. After a week or so, my mother announced that we were “going to stay home and make things”. That seemed odd. We made all kinds of things; I learned to sew that summer.
When I asked if Olivia could join us, Mom refused.
Mom told us that Olivia was away on vacation. Later, I saw her mother driving their car. Olivia must be home again. Still Mom refused to allow her to come. She also refused any other children to come. Mom seemed worried all the time; I didn’t understand why. I thought I had done something SO horrible that she wouldn’t talk about it! Finally, I asked to go see Olivia at her house; Mom got really, really upset. I couldn’t make any sense of her reaction; what had I done? Did I do something to Olivia?
My curiosity got the better of me. While my mother was putting my sister down for her nap, I left the house anyway! When I knocked on Olivia’s door, her mother answered. She seemed startled to see me. I asked to see Olivia but her mother replied; “is it OK with your mother?” “Yes”, I lied.
She left me standing on the front stoop while she went into the dining room. Olivia didn’t come to the door. Instead, I heard a sound: whoosh, whiish, whoosh, whiish. It sounded like a giant breathing. Eventually, Olivia’s mother came to the door and invited me into their dining room. All the dining furniture was gone. In its place was a giant machine that wrapped itself around Olivia like a tin can: only her head showed. Olivia turned her head (sort of) and greeted me. I couldn’t speak. She tried to explain that she had gotten Polio. I still couldn’t make a sound.
I don’t remember exactly what I did next. Eventually, I found myself sitting on the curb about midway between her house and ours. I have no idea how long I sat there. Eventually Mom must have come looking for me. She bent down and looked intently into my eyes. I still couldn’t talk. Her facial expression was the same as the time my sister had been bitten by a dog. Mom gathered me up and took me home. She looked me over physically. Seeing no injuries, she gave me a pill and put me to bed.
That whole experience was buried deep in my mind; until Covid. During the first lockdown, I was awakened by the sound: Whoosh, whiish, whoosh, whiish. I got up and checked the furnace, no noise like that. It happened for several nights; I checked the windows and the plastic sheeting over the glass which sealed out air leaks. I found no “cause”.
Finally, Olivia greeted me one night and I realized where I had heard that noise! My encounter with Polio had come back to me!
Shortly after that summer, the radio announced the “Salt” vaccine. Mom corrected me, it was the Salk vaccine. The school gymnasium filled with children and their mothers. We were lined up, given the shot, and a card. I didn’t like shots. Mom looked elated! She took us out for a chocolate soda to celebrate. Celebrating seemed an odd way to respond to a shot. Olivia’s family moved away. The next year we moved. Only later did I learn that the shot I received was to prevent me from getting that sickness so children couldn’t run and play.
Based on this experience, I suggest the following methods to refocus on Covid as a disease PERIOD.
Polio and the concept of prevention through vaccine remained PRESENT to me because of that (buried) experience. Covid isn’t real for some people because it’s not present. Bubonic Plague left bodies in the streets. The 1918 Flu pandemic left people dying at everywhere. Nurses and doctors saw Covid effects. Those who tried to care for loved ones at home saw Covid up front. Covid isn’t visible to the general public when most patients are whisked away by ambulance, and sequestered in ICUs. WE NEED TO MAKE IT VISIBLE.
Children who suffered from Polio came home in wheel chairs, crutches and iron lungs. They represented the effects of a dread disease. Long haul Covid sufferers don’t have appliances. They have memory loss and trouble breathing. That’s harder to see. We NEED TO MAKE VISIBLE THE EFFECTS OF COVID IN THOSE WHO HAVE RECOVERED.
When I was born, there was only the Small pox vaccine. I remember grownups with a scarred circle on their upper (usually left) arm; their vaccine site. Bringing up a child was no walk in the park; whooping cough, measles, mumps, chickenpox, diphtheria and polio were only some of the hazards of childhood. Generations of parents spent sleepless nights in prayer beside children’s beds. They rejoiced at each vaccine because they had witnessed the alternative. Each vaccine removed the presence of an illness but it also broke the connection with lived experience. WE NEED TO REBUILD THAT BRIDGE. We need to reconnect to dots for those whose lived experience can’t teach them about such consequences. Covid -first wave was real. Covid Variant is also real
WE NEED TO MAKE IT IMPORTANT ENOUGH. Who is important enough to make a difference in our response? When HIV-AIDs developed it only affected gay men. It was first called gay cancer. Some believed it was the judgment of G-d and should be left alone. Then HIV jumped to heterosexual people; it became important. We now have treatments. At first, Covid only took the lives of elderly people in nursing homes. The deaths of younger people in the first variant wave made some realize that a-n-y-o-n-e could die from Covid. Do the right people have to suffer before we take this seriously? Now is it important enough?
This will not be our last plague or pandemic. What changes we make in society’s communication methods now, will decide if we surmount the next two SARS Covid-19 variants. Technology may give us wonderful vaccines, but these will be useless if we leave them on the table due to misinformation.
Thank you Olivia, your life and death were not in vain. You showed me consequences and I am grateful for your gift.
Covid-19 has required us to protect ourselves by wearing masks. Sadly, masks interfere with hearing aids. Thus, those who want to hear must contend with protection that makes hearing aids come loose, fall out of the ear, or tangled with the hearing device. That frustration could lead to quitting the mask or quitting the hearing aids.
We need both. Numerous research articles have documented the connection between maintaining one’s hearing and keeping one’s memory. Hearing aids are for more than hearing. On the other hand, the CDC guidelines are quite strict about wearing a mask to protect ourselves from Covid-19. We will need masks until we can develop an effective treatment and or a vaccine. That could be years.
In Help! My Face Mask Is Getting in the Way of My Hearing Aid, AARP offers some ideas. While these might do for now, we should consider developing an easy-to-use, simple, device that does the job. If we can develop safety pins and zipper; we make a better device.
Senior health studies show that social isolation is as important health as flattening the Corona-19 virus infection curve in seniors.
OPINION: It’s Time to Flatten the Loneliness Curve for Older Americans, by Marc Freedman and John Gomperts, was published in Next Avenue, April 20, 2020. The article discusses the impact of social isolation on elder health. This factor was an issue before Covid-19. However, the quarantine has made their social isolation even worse. The article references other countries’ methods of recognizing and responding to social isolation and encouraging elder social engagement. It offers several possible methods to facilitate the development of programs in the USA as engines to promote a better quality of life for seniors and for society in general.
Did you know that grants were made last year to develop a Social Isolation Task Force and create a public education program? These grants were offered to all the state agencies that operate under the mandate of The Older Americans Act.
I was on one of those task forces in my state. The assumption was the public wasn’t aware of the magnitude of social isolation amongst elders. Another assumption was the public wasn’t aware of the effects of social isolation on senior health and cost of care.
Covid-19 changed all that. We‘ve all had a crash course in the experience of social isolation: the Stay-at-Home orders. We’ve seen people reacting, sometimes threatening violence, in a push-back against such measures. Children have suffered socially, emotionally and in their education as a result of being isolated from friends and school. To combat Covid-19, social isolation was one of the few measures we could employ. While we intended to combat the virus with isolation, we didn’t intend to isolate elders before Covid-19. Our society’s systems just didn’t address elder social isolation.
Our society did not face social isolation before because of three factors; our original population, our history, and our lack of a collective memory experience.
Our population was largely imported, usually young adults and their children. Later, they might send for the elders in the old country, or not. A sea voyage could be quite stressful on an older person. Thus, young people settled here. Later, another generation of young people left for the next new frontier. Our history shows that elders were left behind; again, and again. As a result, our focus was a succession of new frontiers. The USA never developed a role or task for elders. Today, our old frontier is closed. It’s time to bring society into the new social frontier: one in which we recognize we are a multi-generational country. There are gifts from each generation. We need to develop a role, and a function that recognizes the value of elders: a living history, perspective and experience.
We also lack a collective memory of the elder’s journey. We all remember things from our childhood; many of us may not “remember” things from our elder hood; unless we have made that journey ourselves. Society hadn’t experienced certain aspects of aging, like social isolation, until now. We should view stay-at-home orders as our chance to learn what life is like for seniors who are forced to stay-at-home.
What puts elders in that position? Their health may not permit frequent trips outside the home. Other elders are trapped at home because they can no longer drive. Public transportation may be too infrequent, too strenuous, or non-existent. Some elders find that vision or hearing problems interfere with socializing. We have few forums in which all generations come together. Religious institutions fill some of that gap but they can’t cover all the bases. Our neighborhoods are often age-segregated. Schools group children into smaller age cohorts: this is not the era of the all-ages, one-room school house. We build age-segregated housing only for elders. How is anyone to learn about the elder journey if our opportunity for observation and interaction are taken away?
Covid-19 has given us a gift in disguise; we all shared some of the elders’ social isolation predicament. We reacted vehemently to these restrictions on ourselves. Now we know what they feel. The recommendations made in this article should be implemented. Let’s learn from this. As the old song says; ”Someday, some d-a-a-y, we’ll be together. Yes we will, yes we will...”
Has this happened to you? “I took groceries to my Mom. She wanted have coffee with me. I’ve tried to tell her I couldn’t, but she just doesn’t get it! I don’t know what to do”!
Caregiving is a demanding process and Covid-19 adds more demands. Caregivers still try to respond to their loved ones even under new circumstances. In the past, the caregiver could might take the elder shopping; not now. Shopping was an outing, a chance to socialize, and a chance for the caregiver to assess how the elder was doing. Now, we wear masks and are encouraged to shop as quickly: a-l-o-n-e. We only have a fleeting glance at our loved one on food drop-off. We can’t just pop in the house or care facility to check on things for ourselves. We must rely on reports from our loved one, the staff or (sometimes) the news. Imagine reading the news and learning your parent’s facility has a Covid-19 outbreak! Caregivers revealed they felt guilty before, it’s especially true now. Some guilt seems to be rooted in the feeling, “I can’t do anything!”
Yes, you can.
Caregivers used to worry about elders taking medicine properly or eating regularly; now worries include possible exposure, illness & death. To add to these concerns, seniors seem to want more from the caregivers. They ask caregivers to run more errands or ask for things not appropriate to their diet or welfare. An elder asked me to try to take money out of an ATM with his bank card!
Why are elders making more or different or even illegal requests? There are a couple reasons. First, caregivers make the distinction between the Covid-19 as the cause and the changes in our lives as the response. Sometimes, that distinction is not as clear to the elder. “They just don’t get it”; is a sign to caregivers that the senior hasn’t understood in the first place. Everybody has studied something that felt very different when actually experiencing it. Think of your first time behind the wheel of a car. No instruction manual prepared you for that feeling of your foot on the accelerator. Childbirth classes help, but they can’t communicate what it feels like to give birth to a child. After the experience, we “got it”. Making it real,related to the senior’s early experiences, helps them to “get it”.
Second, caregivers understand the impact of this pandemic process. So, instead of doing more errands, we need to take the time to help seniors grasp the process. We feel guilty because we can’t take them out, or can’t give them a hug. So, when they ask for more and more, we do it because it makes us feel better. Have you noticed that more errands just aren’t enough? That’s because errands don’t fill the senior’s real need: finding meaning and support. A conversation, in which you focus on their early experiences, such as quarantine, helps them feel the reality of current circumstances. Explanations don’t work as well as a trip down memory lane. Just making the effort to help them understand the experience will fill their need for direction and support from you. Your senior relies on you in ways they can’t express. When they feel like the world has gone crazy, they look to you. When you show effort to help them understand (not expertise) they become calmer and you’ll feel better too.
Third, just saying NO, puts limits into their lives and is another way to calm your senior. When times are uncertain, a clear guide creates a sense of stability. They sense that you are looking out for them and you are their leader through these times. Your firm guidance gives them clarity.
Then, you have more time and the emotional space to feel less guilty.
Caregivers need not do e-v-e-r-y-t-h-i-n-g; just the right things.
Fourth, a rule of thumb for elders with dementia is; the more dementia, the longer “emotional antennae”. Your seniors are highly attuned to your moods. They just can’t process the information the way they used to. Covid has shifted everyone’s life. Elders sense that you are struggling to adjust your lifestyle. Caregivers may not want to show these struggles. They feel guilty these the elders depend on their care. The elders already know. When you put words on your feelings, it’s like putting on an oven mitt; now you can handle hot stuff. Your words become the elder’s way to express their own feelings. Keep it simple but keep sharing. Remind them of any major adjustments they had to make in the past: WWII rationing, Great Depression job losses. Emphasize how they made it through hard times and the example they were to you. Thus, the caregiver becomes the mirror that reflects the senior back to their best self.
Finally, remind the elder this is only for now, it will not last forever. As the old song says: “Some day; s-o-m-e-d-a-y, we’ll be together (yes we will)!
A daughter commented that she had not been able to visit her parent because the facility was “locked down” to prevent the viral spread from Covid. She could only drop his snacks off at the door. She worried. No matter how many times she explained, she still couldn’t get him to understand.
Many elders and their adult children face this dilemma. All facilities are closed to visitation: even when the elder is dying! The more frail the elder, the less likely they can manage total separation. Seniors need tangible connections; touch, sight and hearing.
How do we keep in touch in an era of no-touch? Families often bring presents to these visits, yet; it’s the present of their presence that elders crave. So, how do we convey presence when we can’t be present?
KEEP IT TANGIBLE: E-cards are nice but a classic greeting card is tangible.Your loved one can hold it or look at it repeatedly. Tuck a greeting card into a bag of groceries or a bunch of flowers. The facility staff can point to it to remind them that you are keeping in touch.
MAIL CARDS: It helps support our postal service and your loved one. Getting mail is a big event in care facilities. It’s not how fancy the card, it’s how often you provide a reminder that you care.
TRY PRINTED PHOTOS: These are more tangible. Perhaps you got your loved one a cell phone and sent them pictures. That wasn’t their early experience. For decades, today’s elders only had the paper option. When you send a shiny paper photo it resonates. Photos used to require going to a studio, posing, and were made for special occasions. Photos were important. So printed photos carry an important message from you; “You are important to me”.
Children’s crayon drawings carry the unique, tangible message. They are especially important if the drawings are labeled with the child’s name, date, and something about the picture. That way, the staff can point out the picture later, when the elder says they think they’re forgotten.
WHAT’S THEIR FRAME OF MIND: We’ve all had a crash course about pandemics. Elders may not have paid as much attention to the news. Some have turned news off altogether. 98+% of today’s elders weren’t alive during that last pandemic in 1918. It isn’t part of their experience. They can’t relate to the scale of lock down necessary to contain a pan-demic. Some may have known families who were quarantined when they were children; but they are not familiar with a whole society in quarantine.
So what do you tell them about why you can’t be there? Start by asking them what they know about today’s news. If they have been following the news, use their level of information to determine what you share about your being away.
If they don’t seem to know; try a simpler explanation: you “have to be away for awhile”. You’ve taken vacations, trips and returned. This is just another time away. Promise only that you will return. Say that in a card as well as on the phone. Say it often. “ Someday, some way, we’ll be together”. That’s what the song says and that’s my prayer for all of us.
Corona Virus-19 is not your parents' quarantine. Before vaccines, quarantines were a common event. Your senior may have lived through several of them. with the passage of time, the anxiety and social disruption may have been lost. All that remains in their minds is that they survived. I've met some seniors who think this is just another flu. They believe that, because they've lived this long, they're immune. It's been a challenge to convince them that this virus has an impact closer to that of the 1918 Spanish flu. I usually ask them if their parents ever discussed the Spanish Flu. Then I draw the comparison.
I've also had to explain that our immune systems change with age. We all know hair turns white/gray with age but not all changes are equally visible. The senior may not realize that they may succumb to this disease because their immune systems are affected with age.
I share these points to forewarn caregivers that your senior my see this disease very differently than you do. What's in your senior's mind? If the senior doesn't get the message, they will be more likely to get the disease.
Stay well and set a good example; wash your hands with your senior.
The Strange Psychology of Stress and Burnout, which appeared in BBC WorkLife’s November 17, 2019 post, discusses the relationship of stress to Cortisol; important. The article described several results or diseases that begin with exposure to prolonged stress. It also mentioned some situations that can cause stress but left one out; caregiving! Already, 34.9 million people are self-identified caregivers. In addition, some people are starting to do caregiving and don’t realize they’re in this new role; yet.
This article shows the photo of a man; yet 66.5% of caregivers are women. The photo shows multiple phones. Yes, many caregivers have spent time on the phone to coordinate care for the elder. However, caregivers face the competition of simultaneously dealing with home, job, and possible child care while doing caregiving! The focus of the article is on job-related stress. Caregivers bring their stress to work with them. Thus, what looks like job burn-out might be a result of simultaneous stressors; job and caregiving.
The remedy described in the article involves changing the perception of the person under stress; Cognitive Behavioral Therapy and changing jobs or shifting responsibilities. Sadly, these are not usually available to the family caregiver. She may not have insurance coverage for therapy. Group insurance plans may not recognize family caregiving as a stressor worthy of intervention. How does the working caregiver access therapy? She has no “off-duty” time. She goes from the career job over to the home “job”.
It’s time for all of us to make sure caregivers as SEEN and heard.
"A Senior Moment" is written by Ms. Sara Lieber, owner of Senior Sidekicks. Ms. Lieber has over 30 years of experience in senior care.