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
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)!
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.
“‘This will be catastrophic’: Maine families face elder boom, worker shortage in preview of nation’s future,” from The Washington Post, could be a description of a dystopian movie: it’s not. This is the state of State of Maine, which is the harbinger of things to come for the rest of these 50 United States. We need to listen to this alarm.
We’re facing a demographic dilemma: not enough young people to fill all jobs, even those outside of elder care. We need them now! Where do we get them? We can’t hire them because they were never born! Thus, current workers remain on the job long after it’s safe or appropriate. Results include accumulated injuries to workers who keep doing injurious jobs. Even the field of healthcare can’t find enough workers or volunteers.
The State of Maine has learned that there is no one available to fill home care jobs. There is no one to fill care facility jobs either. Professional fields have the same problem; many of the number of nurses and doctors are now older and there are not enough of them it is and there’s no one to replace them.
Medicaid pays far less than other employers, drawing the few workers away from elder care. However, simply raising wages won’t help if there are not enough people to hire!
Maine is already experiencing the results, some facilities closed altogether. Others closed admissions for months due to too few staff. No vacancies in care facilities means families must place their loved ones wherever they can. A loved one far away means a l-o-n-g commute to visit. Younger, disabled people also get caught in this care-crunch. If no one is available, some adult children try to fill the gap. Those care gaps further pressure the few remaining working adult children.
Keep this number in mind:
*By 2030, 1 in 5 Americans will be over 60.
*The number of seniors will DOUBLE between 2015 and 2050.
*The senior population over 85 will TRIPLE in that same period.
**We will need 7.8 MILLION new people to fill these jobs. Since we didn’t give birth to them; where do we get them?
This isn’t as riveting as a news story as a fire, or a shooting, that’s the problem. The numbers of affected families are there, but they aren’t collected (aggregated). This problem is spread everywhere.
We’re in a presidential campaign yet no candidate is talking about this national problem. Why? This demographic dilemma is happening one family at a time: Your family is next.
According to The Strange Political Silence On Elder Care, the problem is our society has an extraordinary number of caregivers who haven’t formed a group to push for change. Unlike other groups, such as Mothers Against Drunk Driving (MADD), caregivers should have formed a constituency to insist on changes which better support them; but they haven’t. Why not? One surprising finding is that caregivers don’t recognize themselves! How can our society offer support to a person who denies needing help? How can we help if they believe they can’t ask? What is the effect of this lack of coalescing, lack of self-identification and the resulting failure to prepare and plan?
This article describes the possible reasons:
Senior Sidekicks has stood with caregivers for the past 12 years! The caregiving phase is the newest part of life’s journey. A little over 100 years ago, people didn’t live long enough to reach this stage. Our firm has struggled to get new caregivers and those in the midst of caregiving to accept help. Perhaps this article explains why people, who are otherwise prudent, take such a strange view of caregiving.
Let’s compare and contrast caregiving attitudes with attitudes to other parts of life’s journey:
Your getting married, do you make plans? What kind of a wedding would you have if you didn’t acknowledge you were engaged? How would you bring your lives together in marriage: legal, financial, religious, integrating your families, where to live, and children?
My parents, like many during WWII, had a hurry-up wedding. They were high school sweethearts, and engaged in college. When my father finished his course work and ROTC, he was shipped to Texas. The university mailed his diploma. My mother took the train to Texas and they were married by a preacher on base. They had 3 weeks of wedded bliss before he shipped out for 3 years!
Mother went home to a fire storm! Both sets of parents were in shock. Mother had not completed her college education; could she go back and finish? Would the all-girls school take her back as a married woman? Neither of my parents had completed paperwork naming her his spouse? Forms and letters took a long time to reach soldiers in the field and even longer to receive replies. Who would be the listed next-of-kin in the event he didn’t come home? She even had to discuss possible burial arrangements!! Who was now responsible to pay for her education? Was she to receive his pay since she was his spouse? Mother described it as a very trying time that she had to face alone because they didn’t plan.
Weddings are as much a family matter as caregiving. A wedding, without planning, causes major stress. Caregiving, without planning and support also causes major stress. Yet, families will tell me they’ll handle it all by themselves: really?
Let’s look at another example:
You’re having a baby! Does that mean you don’t need any help? If you’re expecting do you still need proper medical care, resolve legal matters, insurance, or a larger place to live? We expect that expectant parents need help. We’ve developed the social systems to provide it. Having children brings many resources into the family. There are Family Medical Leave Act (FMLA) for both parents in certain situations. There are prepared childbirth classes, visiting nurses to the home after delivery and new mother’s groups. Relatives come to help the new mother and baby. Everybody sends food!
It’s acceptable to have help for babies, why not for caregivers? The difference is we’ve had babies for millennia; caregivers, less than 100 years.
Thus, the family caregiver may or may not receive some defacto help from her church, neighbors, or friends. There’s no visiting nurse system. The caregiver can take FMLA but it’s complicated and doesn’t always cover the type of caregiving the employee needs to give the elder. Many FMLAs don’t pay the employee. Caregiving may mean moving the elder closer to the caregiver, or moving in with the elder. Caregiving may be so demanding that it afflicts the caregiver’s health. The caregiver may be forced to quit the job. A break in the caregiver’s career creates a major financial setback as the caregiver tries to re-enter the workforce. Caregivers often draw on their retirement savings during caregiving.
Other developed countries have seen this writing on the wall and started putting plans in place. Why can’t the US do that? We can, if we act now.
You can do two things:
Talk to your neighbors. Ask what your church is doing for caregivers? Ask your employer the same thing. FMLA, by itself, is not an adequate response.) Are you a member of a union; put caregiver support on the bargaining table. We already have mandatory courses in sexual harassment and discrimination. Make caregiving training the next mandatory course. Are you an employer? If you prepare for tornadoes; prepare for this gray tsunami. By 2030, 1 in 5 Americans will be over age 60
ENTER THE POLITICAL DEBATE ON THE SIDE OF CAREGIVERS: It’s time to insist that the political conversation of this campaign is about p-r-e-p-a-r-i-n-g for this gray tsunami! It touches everyone. It’s not red or blue, it’s GRAY. Candidates will ask for your vote; tell them to put caregiving in their platform to get your vote!
Caregiving is at least as important as any other policy
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.
As we approach the holidays, we consider visiting elderly relatives or arranging for them to visit us. While I cannot offer a guarantee of a pleasant visit, here are a few things to keep in mind to avoid some of the pitfalls
"A Senior Moment" is written by Ms. Sara Lieber, owner of Senior Sidekicks. Ms. Lieber has over 30 years of experience in senior care.