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.
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.
The Reuter's article, U.S wages lost to unpaid family care to hit $147 billion by 2050, describes lost wages and pressure on caregivers to switch to part time work or quit all together. These are definable numbers which the article describes well. One doesn’t hear enough about these issues and costs in the news media. I call upon anyone who knows a caregiver to insist on better public discussion on these caregiving issues/ costs/pressures.
I've always worried that caregivers also lost opportunity as well as wages. They are less likely to be offered new projects at work which can polish one's resume. They can’t take the lateral move which puts the employee in line to move up in a branch of the organization. A promotion comes with more demands on time and a different schedule. How can the working caregiver manage that? Promotions may mean a move out 0f town; how does a caregiver juggle that? So less chances to rise in a career.
In addition, caregivers suffer hidden damages to their careers.
Just taking repeated PTO (Paid Time Off) casts a shadow over one's career. Eventually, PTO runs out. When PTO runs out, the employee is left with FMLA (Family Medical Leave Act). That is usually unpaid. The employed caregiver must consider loss of income along with caregiving pressures.
I'm also a member of Society for Human Resource Management (SHRM), and read their daily dispatches. It appears that employers are more comfortable allowing the employed caregiver a block of time, like a week or two, to handle a health crisis. Piecemeal time tracking is another matter. There are some tracking systems, however, these seem to be evolving methods.
The employed caregiver may need to use her time in piecemeal form. Perhaps she takes her lunch time to supervise the elder taking medications. Her commuting time would be deducted from PTO or FMLA That's the typical shape of elder caregiving, a mosaic of times and tasks squeezed together throughout the day.
So both the employed caregiver and her employer are both carrying this process. The caregiver is doing the tasks and the HR manager is handling the administration. This produces an implicit time cost to the employer. Why would the caregiver’s boss consider her for special projects, a move, or a promotion? These would demand more of her time and the employed caregiver doesn't appear to have any time. In order to develop one's career, one must appear to be ready and willing as well as able. No employer really knows whether any employee is truly available. However, a string of PTO/FMLA requests create an image of less availability. It’s a subtle form of job “loss” that doesn’t show on the paycheck.
Only the US and England have a patchwork-to-none system for dealing with our aging population. Other European countries have created caregiving support systems. Why aren’t we looking at them?
I’ve spent most of my career working with seniors and now I’m a senior. That position allows me to see certain situations with two viewpoints, professional and personal. A recent incident allowed me to glimpse a common situation families experience with seniors but from the internal viewpoint.
The typical scenario goes like this; family member does something they think would help the senior. They do it without discussing it with the senior; just present their contribution. The senior is far from appreciative. Instead, they are upset, angry, or dismissive. The family member reports that they feel wounded, or frustrated. Families say; “I was only trying to help!” Why didn’t the senior see the value?
Ask yourself; “When I do things for my senior, am I doing it with them or to them?”
I got to experience this myself. Recently, I visited my children in New York. We rented a B&B which turned out to be awful! After confronting the agent and securing a refund, we had a sad dinner. It was late at night and the children were on their phones looking for lodging. We trudged to the hotel; I checked in and went to bed. Unbeknown to me, the children believed the hotel was “dodgy”. They stayed up to late to book another hotel! Now, I was on the hook for a bill I knew nothing about!
I woke up to a call from my daughter-in-law with this news. I had not yet showered, no breakfast, and now I’ve got to deal with this! I strenuously objected. Insight came to me in the shower (which was running very s-l-o-w-l-y). Three words stood at the center of this conflict: for, with, and to.
My children thought they were doing something for me by booking another hotel. It didn’t feel like that to me. Is that what’s going on internally when the senior objects? Does for take away another piece of their autonomy?
They didn’t do it with me. They kept silent instead of sharing their concerns about the hotel. They made financial assumptions instead of asking me questions. Their decision put me in a money bind.
I felt as though things had been done to me. Is that what’s going on internally when seniors object? Are they really mad about the item or the way it came to them? Do families need to take time to walk the senior through the process (preferably after breakfast) or find some way to engage them? I believe that for is a good thing, in the combination of with, so it doesn’t feel like to.
P.S. The next hotel had a better shower.
When families gathered on Thanksgiving day, some realized that their senior was not the same as last year. Families often respond by doing internet research. The internet is a good first step. However, some sites make outlandish claims. I saw one that offered a treatment that “cured Alzheimer’s”. There is no cure and some of these sites can offer dangerous suggestions.
Here are a few reputable sites that offer reliable information:
Alzheimer's Association. This site also has a page devoted to explaining the different types of dementia. It also lists other physical conditions or environmental conditions that can look like dementia.
American Society on Aging. It can feel encyclopedic in size. The society has done decades of research and offers reliable information. It’s a good second step.
AARP offers many programs and information for families as well as seniors. Each state has a chapter with offices in each area. Look up your state to find help in your area.
And Senior Sidekicks offers a course; Preparing to Parent Your Parent, to prepare families for the practical issues they will face as they become caregivers. Contact us about teaching this course in your church or at your job. Call (217) 787-5866 or email us for more information.
One of my patients recently complained. I asked her what her doctor said. She told me she had forgotten to tell her doctor. She told me that she had become used to the problem and “accepted” it. Many senior-related articles advise writing down symptoms and questions before visiting the doctor. Good advice; as far as it goes. It’s the stuff that falls off the radar that could be the most important. The doctor needs information from the patient or the patient’s advocate. That information is the basis to decide which questions/tests to pursue.
What kind of information doesn’t get to the doctor?
Age is a stage of life, not a diagnosis. Sadly, some seniors think is a diagnosis. Seniors may accept pain or changes in their bodies as “just getting old”. Pain is a symptom. It’s our body’s way of telling us (at any age) that something isn’t working. Please take your senior’s complaints seriously, even if all they say is; “I don’t feel good.” That complaint is a place to start. Repeated complaints indicate a persistent problem. I use three points to examine complaints: frequency, intensity, and duration. How often do they complain? How long have they complained? Do they report things are worse or better than earlier? Doctors analyze these kinds of information to help them decide what questions to ask next. Please complain; it’s helpful.
Some seniors believe they shouldn’t complain. You may need to explain to them that this is a report on their health rather than an annoyance. Some seniors complain without words. Does the face contort? Does the voice tighten? Do they seem more irritable at certain times of the day? Something’s going on. Ask them to please complain to you out loud.
Earlier this year I knew something was “off” within me. I went to the doctor but the lab tests were inclusive. Nevertheless, I persisted. I tracked what I felt and when. I brought this information back to the doctor and insisted on considering other options. Eventually my pattern was clear enough to prompt the doctor to ask other questions. I received a new medication and it worked! I complained, but really I was advocating for myself. Some seniors cannot self-advocate. That’s why caregivers are so important. Please persist if the first treatment doesn’t work. Please complain for them.
By the way; this is a portion of my course; Preparing to Parent Your Parent. Senior Sidekicks can bring this course to your church at a time convenient to you.
When someone advises you to, “take care of yourself”; that doesn’t explain how. Elder caregiving is so new that some methods are still under development. However, we know some things that work and some to avoid. Self care does not mean a day at the spa. For many caregivers such a day would be out of reach financially or out of time to devote to a spa. Therefore, plan to care for yourself in moments, not hours. Think about your life like your heart; it beats all the time. Actually your heart takes a tiny rest between each beat that allows it keep going. When you care for yourself in moments, you pause and continue.
Try these ideas. Put up a sign saying, I NEED A MOMENT, to remind yourself to pause. Put up other signs family can see to remind them that you might need a moment before you can respond to their requests. Is the person in need bleeding or on fire? If the answer is no, then it’s OK for you to take a moment. It’s OK to train your family to allow you to do so. It’s OK for you to ignore repeated pleas for your attention (for a moment). Training takes time but you’re worth it.
What do you do in that moment? Be sure you are safe. If you’re up on a ladder, get down first. Focus on something blank, like a wall or the ceiling. Breathe, deeply, through your nose, hold and count to 3 or 4. Let your breath out through your mouth but slowly; 1-2-3-4. Now, if you can afford the time, try looking at something peaceful; out a window, at a picture, or at some memento that is meaningful to you. Breathe again the same way.
Many caregivers respond with; “I don’t have time to …” You’re right, time is at a premium. Most caregivers find themselves in that role at the same point they also have the house-the spouse-the kids-the job-the pets and MOM! You have a lot on your plate. Sometimes caregivers believe they can wait until they have time. By waiting until later, the damage from lack of self care will have done its worst. Undoing damage is much harder. The best intervention is prevention. Prevention comes in bits of time you claim now.
Suppose you actually have a whole hour to yourself. It’s a gift! Ask yourself, “What refreshes me?” Notice I didn’t say what can I eat nor where can I sit down? Some caregivers eat to cope with stress. We need nourishment but not that way. Rhythmic movement, like walking, can help us feel less worn and is surprisingly refreshing. If you can’t go far; walk around the house or around the block. If you live in an apartment building, walk in the hall. “Go get the mail”, that errand will buy you a few minutes. Try to set a self care routine just as you have set other routines with child care or at work. Routines help us get things done without doing us in.
Some things to avoid include sugar and alcohol. The stress hormone, Cortisol, takes sugar and converts it into weight around your middle. Sugar may not be sweet; baked goods convert to sugar. As part of a balanced meal they’re fine; as a snack, not so much. Large amounts of food can have a numbing effect; like a Thanksgiving dinner. When we feel numb, our minds seem to turn off. When you see you have time and turn to the refrigerator; ask yourself why are you eating? In a similar way, alcohol can create a numb feeling. We believe we’re relaxed but a caregiver’s immune system is more vulnerable and needs extra protection that alcohol doesn’t provide. Alcohol is also a depressant, which won’t help caregivers.
So how does one “turn off” the constant “list-making” that goes on in the caregiver’s mind? Try other things. Try relaxing teas like Passion Flower, Elder Flower or Chamomile. Try playing some relaxing music that’s meaningful to you. Try a rhythmic movement “dance” (try it with your partner). Try a hot shower or better, a hot bath. Try placing essential oil of lavender in your bedroom. All of these set the stage for relaxation. Develop your own mediation or routine to think about at bed time instead of a to-do list. There are also tapes available. So self care comes in moments you claim as your own. To learn more ways to cope, take our course: Preparing to Parent Your Parent.
"A Senior Moment" is written by Ms. Sara Lieber, owner of Senior Sidekicks. Ms. Lieber has over 30 years of experience in senior care.