Why Not Prepare For Caregiving?

At a social gathering a woman at my table stated she had not thought about herself as a future caregiver. She told me; “My parents are fine right now and thinking about them needing my care is scary.” Her comment made me think about what holds adult children back from preparing for caregiving. I see four reasons:

First: It’s scary. Certain factors make circumstances feel scary. When we don’t know what to expect; it’s scary. When we don’t know how to respond; it makes us feel helpless and scared. When we don’t know where to get help; it makes us feel alone and scared. No one wants to be in that situation. It’s normal to withdraw when we don’t know what else to do. There is a better way; preparation.

Our society has found ways to meet other challenges by preparation. For example, I live in tornado country. We never know when the weather will change. Yet, we don’t sit paralyzed: we prepare and respond. We have weather warnings, sirens, shelters, and drills. We may have tornadoes, but we don’t take these lying down! Because society prepared, life goes on.   Life could go on for caregivers as well if they were prepared.

Caregiving preparation follows the same preparation pattern. Learn about it. Make contingency plans. Engage others effectively. Preparation removes the scary parts of the process. I developed a course, Preparing to Parent Your Parent, to help new caregivers or future caregivers do that.

Why do some people respond to a course for caregivers like this? “I’ll deal with it when the time comes.” Really! Think about the other ways they prepare. Would they wait until their car slid off an icy road to check the tires in winter? Did they wait to study childbirth until they were in labor? If they would do those preparations; why not do the same for caregiving? The worst time to make plans is in the midst of a crisis!

A second reason for hesitation: The same person described her concern about elder-related information. She felt like she had so much to learn she didn’t know where to begin. She wasn’t sure how she could remember it. Information overload is a 21st Century condition.   Some people have described it; “like drinking out of a fire hose”! The internet doesn’t give caregivers ways to order, relate, and manage information. We have always had ways to manage information. Remember the card catalogue in the library? It helped us find the right book. We didn’t need all the books at once because we knew we could return to get more information when we needed it.   A caregiving preparation course does the same task as the library card catalogue; manage information. My course turns the information fire hose down to a drinking fountain!

The third reason future caregivers hesitate is they do not have role models from their early lives. There’s a reason for that missing link; the age change happened so quickly. Let’s compare; in Sangamon County, in 1910, the average life expectancy was 50-53 years (depending on gender and race). Compare that to 2010; when the average life expectancy was 77-78.8 years. That’s a big jump in only two generations! Contrast that change with millennia we have born children. People grew up seeing many adults caring for children. We received role models by social osmosis. We have not had the same numbers of seniors, for as long, very until recently. We don’t have an historic set of elder care wisdom yet. We can fill that gap with preparation. We can learn new skills just as we learned to drive a car. We can adapt to changes, just as we have adapted to the internet. We have already learned and adapted to other things; why not apply them to elder caregiving preparation?

The final reason caregivers might hesitate is worry about health. That is not a selfish attitude. Every organism is oriented to preserving itself. Taking care of ourselves as we care for others is an essential skill (and included in my course).   Many elder caregivers are also responsible for children, spouse, house, pets, and the job! It’s not selfish to be worried about how to will meet the needs of all these other people and the senior’s. It’s admirable to have these concerns answered.

Preparation is the key to helping caregivers remove fear, overwhelming feelings, missing role models and caring for themselves.



Who Is Right?

An adult child responded to one of my visit reports in which I had written about her Mother’s use of portable oxygen. She replied that her Mother really didn’t need it; her attachment was all psychological. The adult child told me the Mother had been previously evaluated for respiratory functioning and found “barely qualified” for oxygen. I replied that my observations didn’t confirm that; Mother was currently gasping for air upon exertion.

After a hospitalization, the tests showed the Mother had pneumonia. Pneumonia can be subtle in the way it looks to observers. We might think of it as a disease that leaves the patient unable to breathe at all unless aided. Not really. In my years working with seniors I’ve noted a variety of presentations. Some seniors describe a “smoker’s cough”. Some seem to have a cough that just hangs on. Some report they have “allergies” (that present as a cough). Some of these self diagnoses turned out to be pneumonia. This is a factor that should not be left to chance.  Remember Jim Henson (the creator of the Muppets) died of an untreated walking pneumonia.

We need to check because what we can see may not be the whole story. For example, I asked one of my social workers about a reported reference to a senior’s cough. She said the senior had this symptom for some time. I required her to get the senior an evaluation.   The tests showed a severe pneumonia that required hospitalization!

How can caregivers know; we’re not doctors? When I talk to seniors, I keep these three points in mind; frequency, intensity, and duration. When the cough has hung on a long time, it’s a duration indicator. Ignore self diagnosis and get an evaluation. Why, because seniors are more at risk. They may not be as active, they may be overweight, or they may have compromised immune systems. Just because a senior was once evaluated doesn’t mean they are still functioning in the same way.

Who was right; both of us. The adult child observed her Mother clutching the oxygen tanks.   She did. I observe the Mother struggling for air when she transfers to and from the car. She did. The evaluation didn’t throw out either observation, it linked them. The Mother was struggling and responded by becoming hyper aware of her oxygen tanks.

It’s helpful to remember this tale when home care, or facility staff report an issue. Their report may differ from your observations. Evaluations help provide answers and directions. Ignoring reports can lead to more complications.




Seniors & Fake News

4 Foods That Could Increase Alzheimers Risk And Memory Loss is an eye catching, and you might want read more.

However….. this is pseudo news! Yes, memory problems are major factor in senior health. Yes, a good diet is helpful. NO research sponsored by the Alzheimer’s does paint the same picture as the article. I reviewed the research summaries of the projects the Alzheimer’s Foundation has funded. They mention a heart-healthy diet and recommend two; the Mediterranean and the D.A.S.H. (Dietary Approaches to Stop Hypertension).

Yes, the Foundation does connect heart health and diabetes prevention with Alzheimer’s prevention. However, they caution readers to remember that the disease is “complex of interactions among multiple factors such as age, genetics, lifestyle and coexisting medical conditions”. Some factors like one’s age or genetics cannot be changed. Some factors like diet and lifestyle can be modified. Contrast these statements with the statements in the article. There is no mention of other factors. It might mislead one to think that changing diet alone will prevent Alzheimer’s!

The article makes no mention of exercise and social engagement. Yet the Alzheimer’s foundation considers them equal factors. The Alzheimer’s website further explains that large studies show “associations” but these are not proof of cause and effect. Thus, research has found that people who follow a healthy diet, get regular exercise and are socially engaged are less likely to suffer memory losses than those who don’t. We don’t know the WHY yet. The article does not explain that diet is only one factor.

Finally, I entered each of the compounds mentioned in the article in the search window of the Alzheimer’s website: NADA! There was no mention of nitrites, Diacetyl, or Nitrosamines. The article mentions processed cheese, beer, processed (cured) meats and microwave pop corn. These are not on the list for the heart healthy or D.A.S.H diets recommended by Alzheimer’s research.

Pseudo news can be mis-leading.  People suffer.  Example; fake news articles can lead people to think that certain miracle cures will take away chronic health conditions.  Fake news has led lead people to do things that injure others and themselves.  Remember the man who took a gun to a pizza place because a fake news article reported that Hillary Clinton was running some nefarious operation out of the basement!  Fake news is mis-leading= leading in the wrong direction.  Everybody suffers. That man who stormed the pizza place now has a criminal record.  The pizza place now has a ruined reputation.  People got hurt. We all must protect ourselves from getting hurt by analyzing news stories on the internet.

Fake news is not new; it’s just packaged in a new format: the internet.  Real reporters, subscribe to certain rules such as interviewing witnesses and cross-checking stories.  A real reporter would have been required to go to the pizza place and check out the story BEFORE publication. That reporter would have to answer to the Editor and the newspaper company if anything went wrong. To what authority does an internet author answer? A reporter who created fake news would be fired.  Who “fires” an author on the internet?   The newspaper would be required to print corrections or retractions. What internet author do you know who has had to print a retraction?  Those rules are not yet part of internet reporting.

Trustworthy newspapers also subscribed to the rule; “All the news that’s fit to print” *.   Reporters do expose’s but these would be backed-up with research data; remember Watergate?  Even in the days of newspapers, there were those publications called “yellow journalism”.  The trustworthy newspaper standards were adopted by radio and television as they developed. Thus, the media present when your parents were growing up also tried to provide reliable information.  Unfortunately, the internet is so new that we have not yet developed a filter to separate the reliable from the unreliable.

We must all analyze what we read. We must all cross-check information with reliable sources. Some seniors may see the internet as just like a newspaper or radio. It is important to explain to them that the internet is different because no journalistic standards have been set yet.

*New York Times



New sick leave legislation for Illinois: It’s about time!


The NPR December 29th story, Illinois Issues: New Laws In 2017,   is on the enlargement of the scope of sick leave policies in Illinois. On January 1st, 2017, employees can take paid time from work to care for other family member’s medical needs, including their parents or in-laws. Adult children are bombarded by so many sick leave issues. They often have the house-the spouse-the kids-AND Mom!   Suppose their spouse has a medical appointment for which they are not allowed to drive themselves? Does the employee take the time and lose the pay? Must they choose between keeping a sick child home from school and missing a day’s pay? Since elders use the healthcare system the most, adult children find those appointments more frequent and lost pay more of a burden. Since medical office hours usually overlap working hours, what’s the alternative for working caregivers? This change in law does not affect those employers who do not offer any paid sick leave.   However, it’s a first step.

Some concerns were raised about benefits. I see four. First, it keeps employees on the job. So employers avoid the costs of hiring, training and acclimation of a new employee.   Employees who might miss work are otherwise good workers. Why drive the good ones away? I’ve hired for two previous businesses and discovered that finding the right person was vital.

Second, employees who receive this benefit will be even more committed to the job.   Many times caregivers have told me about the lack of support in their jobs. Thus when employees receive some support, it welds them to their employers.

Third, some “paid sick leaves” might be quite small. A caregiver told me her boss was upset because she was sometimes late (by 15 minutes) returning from lunch. Her Alzheimer’s-afflicted husband was still at home. She went home to give him his pills and serve him lunch. If she encountered a train blocking her return, she had to wait. What if the employer had staggered her lunch hour at a different time or she arrived 15 minutes early? A recent research by AARP showed we have 43.5 million caregivers in the US. An employee with caregiving duties is no longer an if; it’s a when.

Fourth, a Caregiver Emerita (her loved one passed away) told me she had to quit her job! Caregiving usually arrives as adult children are reaching the pinnacle of their careers. This should be the time of greatest economic gains, investments in their own old age, and buying power. Those are lost when employees are forced to choose (or quit). The bottom line is businesses are organized to make money. They do that by selling goods or services. If there are fewer people to buy those things, the business loses money. Keep people on the job, it pays you, the employer.

Why is this legislation a good first step? We will have a chance to test the idea. Some businesses don’t have paid sick leave, others do. After a year, we can review statistics. I will look into my senior-oriented crystal ball and make some predictions. ONE, some caregiving employees will seek jobs in companies with paid caregiving sick leave policy. Thus, those employers will have the larger applicant pool. TWO, those employers who have paid leave find their turn-over rates drop. Even if some employees do not yet have senior caregiving duties, they can see how their employer treats coworkers. Businesses have two reputations; one is in the public sphere, the other is internal. Paid caregiving sick leave enhances the internal reputation. THREE, just the knowledge that caregiving employees have some help will reduce their stress. Stress is a major factor in illnesses of all types, especially chronic illnesses. How would you like to lower your medical costs? FOUR, I predict this policy won’t cost as much as it pays.

Tune in again at New Year’s 2018 to see how the policy affected caregiving employees and their employers. HAPPY   NEW YEAR   TO ALL!



(Funeral) Home For The Holidays

Families grieve the loss of a loved one at any time of the year; the holidays only add to the pain. Dealing with loss and grief are hard work for those struggling with dementia. One of my patients recently faced this triple impact. Her journey is a great illustration of the differences in that process.

When the senior was first diagnosed with dementia, she had arranged for her sibling to act as her agent under Durable Powers of Attorney for health care and finances.   Years later, her sibling became terminally ill. The successor agent took over but that did not resonate with my patient. She continued to see or call her sibling; nothing changed for her.   Eventually, the disease worsened and she and I were called to a final visit in the hospital. I and her sib tried to explain that this was the final visit. (I took a photo of the two of them together). On the return, my patient showed no signs of acknowledging her sib’s impending death.

When the death occurred, I visited to tell her in person. She did not seem to remember our final visit in the hospital until I showed her the photo. Upon seeing it, she looked as though she was going to cry but didn’t. She asked why the photo was taken in the hospital.   Our conversation began with a re-explanation of the severe illness. She denied it’s seriousness at first. My patient mentioned medicines in a questioning tone.   I re-explained that medicines could not cure this. Again her eyes got red; no tears. She had “adopted” many stuffed animals, now she held several in her arms. She pointed to a Christmas decoration and fiddled with her socks but kept hold of the stuffed animals. I expressed my sorrow for her loss. She looked at me with an expression of fear. I put my arms around her and told her that she would not be alone. I named all the people would still be there to take care of her. With those words, she cried.

Processing grief for those with dementia is like shoveling snow with soup spoon. One of the effects of dementia is loss of vocabulary. How hard is the grief work for us? How much harder is it when one is at a permanent loss for words? Therefore, it was as important for me to “read” the behavior as well as listen to my patient’s words.   For example, on the return trip from the hospital I noticed that her behaviors appeared to ignore the visit. These behaviors did not match my patient’s red-rimmed eyes. I sensed that she was trying to absorb the experience.   When my patient pointed out the tenth set of Christmas lights; I reached over and took her hand saying, “I’m here for you”. She didn’t mention Christmas decorations again.

Sometimes I responded to her behaviors as replies. By speaking to the behavior, she seemed to grasp that I was trying to understand her. I found it was not helpful to repeat things. It was more important to read her and give her openings to express herself in the medium of her choice. I also found that she could only stay on the subject for a short time.

Some staff at her facility wanted her to be sure that she knew her sibling was dead by repeating it. I’m not sure that tactic was helpful. My sense is that my patient did know on one level and was trying to absorb it on deeper levels.

In some ways, her methods of processing grief reminded me of the way small children process. When she looked at me with an expression of fear in her eyes, she reminded me of a small child learning a parent has died.   My patient is aware that she can no longer take care of herself. I responded to her fear of being left alone (without care). Thus, her tears may have been a sign of relief as well as grief. When we experience loss as adults, our grief is not mingled with a sense that we are in danger of being without someone to care for us. Our grief resonates on another frequency. I found it was important to “tune” my ears to the frequency of grief processing in dementia.

In my experience, dementia patients know in some ways about a loss. They also process better when presented with concrete items like photos and a prayer card with a picture of the deceased.

It was her sib’s wish that my patient not attend the funeral. I could not imagine her dealing with so many people offering condolences. Instead, I took the prayer card to her the next day. After we discussed it, we took it to the nurses’ station together. There, several staff admired the card and offered my patient their condolences. Thus, my patient received acknowledgement on a scale that fit her abilities. She nodded her head to each staff member and seemed uplifted by this part of the process. I anticipate this topic may come up again. I will respond to her expressions when she wishes; be those in words or behaviors for short time periods.


Tis the Season to Defraud

The holiday season partly overlaps Medicare Part-D enrollment as well as end-of-year tax planning. Scammers will be calling your senior. As the family gathers, remember these topics and discuss them with seniors.  Here are a couple conversation starters:

“Have you heard that people are pretending to represent Medicare by calling folks to ask for their Medicare numbers? Have you gotten a call like that?”

FACT: Medicare already has your number. Please check their MSN sheet (it says this is not a bill at the top)to check for charges that are not theirs.

“My Friend said they got a post card from a company offering free back or knee braces to people on Medicare. Have you seen mail like that?”

FACT: Only your doctor can prescribe equipment. Talk to your doctor. The “offer” is another way to get personal information.

“I see many commercials about insurance company offers for Part-D drug coverage. Do you have a Part-D plan that covers all your medications?”

FACT: Part-D open enrollment ended 12-7. However, if your senior took a plan because of pressure from an aggressive salesperson, you may be able to change it. Contact the Area Agency on Aging for Lincolnland, Beth Monnat; 217-787-9234. Each Illinois AAA has a contact person.

“I’ve heard some people are getting calls from the IRS asking for personal information and claiming they owe back taxes. Have you heard about it?”

FACT: The IRS does not need personal information, they already have it. They do not call, they send letters. If your family member received such a call, contact the Area Agency on Aging or the IRS.

I receive these alerts in regular email notices. They are published under a grant from the Department of Health & Human Services, Administration for Community Living. This is part of the Age Options program.  Subscribe by contacting Jason Echols, MSW, at jason.echols@ageoptions.org             Stay safe this holiday season.