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
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.
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?
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.
Imagine you’re sitting quietly in a meeting or religious services; suddenly your heart starts pounding. You feel like your blood is coursing through the veins in your arms and legs. It’s bewildering and scary: Why?! There is nothing about this setting that calls for such a reaction. Yet, you have this reaction. It is important that caregivers understand what leads to this reaction and what they can do about it.
It’s a “fight or flight response gone wrong. It developed when we had to run away from Saber Tooth Tigers. Our ancestors were successful, that’s why we’re here. Those ancestors passed down to us their methods of coping with their world. Our modern world doesn’t have the same kinds of stressors, especially for caregivers. Our stressors are less clearly defined And they last longer. Our stressors change shape; one minute we’re dealing with the house-the spouse-the kids-and-the job. Then there’s a crisis and we’re caregivers for Mom! From that point forward, our caregiving increases but with no way to know when the need will become greater or how long caregiving will last.
Our bodies respond as our ancestors’ once did; we produce Cortisol to rise to this crisis. The process goes like this: Stress causes the Hypothalamus to secrete. That triggers the Pituitary Gland to secrete. The Adrenal gland secretes Cortisol. This process has several names: HPA Axis, HPA Cascade or Syndrome X, or AKA Insulin Resistive Syndrome. (Wouldn’t it be helpful if we could all agree on one name?) It’s not the crisis that’s the problem. It’s the crisis that doesn’t end that creates bad effects on caregivers.
The effects show up in different ways. Cortisol encourages promotes fat deposits in the outer layer of the body, especially the waist. Some caregivers gain weight. We can measure this effect by doing a BMI (Body Mass Index). Other caregivers have different conditions; heart disease, Type-2 Diabetes and Stroke. We can measure Cholesterol levels through a C-Reactive Protein lab test. We can also do a cheek swab to check Cortisol level. However, how many doctors don’t even ask patients if they are caregivers. The tests are there but they are not used to evaluate identified caregivers at this time on a general basis. You need to ask for them.
When our bodies rise to meet a crisis: they must also let down. Even Saber Tooth Tigers would give chase and then give up. The caregiver’s duties do not end the same way. In fact, they do not “end” unless we place some “ending points” into the caregiver’s life. That is the role of self care, to provide end points such as respite and small moments. That’s why it’s necessary to spread the caregiving load so it doesn’t fall on one person. That is why we need to enlist family to give caregivers this kind of support. Otherwise, the caregiver can be sitting quietly in religious services and the Cortisol response “alarms” for no exterior reason. We need to advocate for caregivers to be recognized in the medical arena. Learn more by taking our course; Preparing to Parent Your Parent.
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.
Caregivers experience a jolt when confronted by their bosses about changes in their job performance. For some caregivers, these issues are the first sign that something has to change: now! Perhaps they didn’t realize that they were regularly tardy or missed important meetings. Did they know that they also missed important details in doing the job? Your boss noticed.
Most bosses don’t know what to do to help the caregiver with those issues. They just want employees back on track at work. Senior Sidekicks knows how to help. Take our course Preparing to Parent Your Parent to get back on the job track. Why take this course; because you must handle caregiving differently. In just 5 classes, you will learn ways to cope with and better manage caregiving.
Senior Sidekicks brings this course to you; at your church or club. Senior Sidekicks teaches Preparing to Parent Your Parent at your convenience; evenings, weekends, lunch hours or days. One low price gives you 5 classes, a manual, and chance to bring your significant other for half price! This course shows your boss that you’re tackling this problem and wrestling it to the ground! Call Senior Sidekicks today at 217-787-5866.
"A Senior Moment" is written by Ms. Sara Lieber, owner of Senior Sidekicks. Ms. Lieber has over 30 years of experience in senior care.