Category Archives: Awareness & Activism

A new caregiving podcast

I love to promote those helping to spread awareness of the triumphs and challenges of family caregiving.

A new podcast, engAGING Conversations, launched this month. Sheryl Smith, RN, BSN, M.Ed Certified Health Coach, has created this podcast to cover a wide variety of caregiving topics. I recently had a conversation with Sheryl, in which we discuss my book, The Reluctant Caregiver. The episode is scheduled to air March 20.

On Google Play (requires login)

On iTunes (requires free iTunes software)

engaging conversations

Smith has the experience of being a professional caregiver as a nurse and caring for her parents as they aged. Her insight is so valuable to family caregivers. Smith also hopes to carry forward the conversation about end-of-life planning, which is a topic near and dear to my heart.

The first three episodes are posted on Sheryl’s website, and you can subscribe to the podcast via your favorite provider.


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How can we prevent deadly encounters between those with dementia and law enforcement?



As the nation grapples with another school shooting by another person with mental illness, I can’t help but think about those with dementia who exhibit violent behavior.

It’s not something a lot of people want to think about or discuss. But the truth is that those with Alzheimer’s and other dementias can become violent. My own father became physically violent towards my mother as he sank into the middle stages of Alzheimer’s.

I can only imagine what would have transpired if my mother had called the police the night that my father struck her in the jaw. His flashes of anger and paranoia were at the peak at this time. I can see him lashing out at authority. I can see him ending up like Stanley Downen.

Downen was 77 and was in the latter stages of Alzheimer’s, Reuters reported. Police were called to the nursing home he resided at because of a wandering resident. Downen had slipped outside of the facility’s gate, and staff members were trying to encourage him back in.

Downen, a former iron worker who had served in the Navy, was angry and cursing.  He said he wanted to go home. He grabbed rocks from the ground, and threatened to throw them. As the officers approached, one was concerned enough about the threat that he decided to use his Taser on Downen. The older man went down quickly,  his head striking the pavement. He was taken to the hospital and never left. He died three weeks later.

There have been warnings about using Tasers and similar products on the elder population, as they are associated with a higher risk of injury and death, but the officer involved in this case claimed he never heard about the warnings. A lawsuit filed by family against the city and state was settled in the family’s favor.

It’s situations like these that are so difficult to manage. Mental illness by its vary nature is unpredictable and can unleash violent behavior. How do we show compassion for those with mental illness while protecting innocent lives? At what point is force necessary? And perhaps most importantly, how do we prevent these situations from occurring?

In the case of Mr. Downen, better security protocols and perhaps more staffing could have prevented his escape from the nursing home. Better training and established protocols could have determined a different course of action once the police were involved.

One thing seems clear to me: whether you are 18 or 80, we have to figure out a better was to manage mental illness in this country. We either bury our heads in the sand in denial or we overmedicate people into zombies. We need to open an honest dialogue on the subject and then take concrete actions based upon those discussions.

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How can we improve doctor-family caregiver communication?



I am a member of several caregiver Facebook groups and one common thread I read about is the frustration family members experience trying to communicate with doctors. From hospital discharge plans to changes in medication, family caregivers often feel like they are left in the dark by physicians, which makes caregiving even more of a challenge.

Doctors typically respond that they don’t have time to have such discussions with caregivers, leaving that task to nurses or other hospital staff members. Some doctors also exhibit a reflexive reluctance to establish communication with a patient’s family members.

It’s clear that there are tangible benefits in making sure a patient’s family has the necessary resources to manage a loved one’s care at home. The ultimate goal is to reduce the amount of repeat hospitalizations. Empowering family caregivers with information on medication, at-home treatments and home health services can make a major difference in a patient’s recovery.

I felt the communication involving my father’s care was handled poorly. So many decisions seemed to be made with little input from family because we weren’t present at the moment of crisis. With my mother, I accompanied her through hospital stays and was there to advocate for her, so the communication was better.  There were plenty of times when I had to extract information out of an inpatient, reluctant doctor, but I learned to push until I got the answers I needed.

It shouldn’t be so difficult for family members to obtain information on their loved one’s medical status and future care plan. This should be an automatic discussion, whether it’s done with a doctor or other health care professional. The CARE Act, passed in many states, directly addresses this issue and makes sure family members are involved in hospital discharge plans. The RAISE Family Caregivers Act, if signed into law by the president, could also address this issue and offer a national recommendation.

My heart goes out to those caregivers who are dealing with the frustrating process of communicating with medical professionals. I hope legislation along with continuing caregiver advocacy helps improve the frequency and quality of doctor and family caregiver communication.

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This year’s bad flu season even worse for seniors


Photo: David Lat/Freeimages

It’s the time of year when you can expect to hear a lot of coughing, sniffling and sneezing in public spaces. I just came back from the dentist and the receptionist sounded like she had flu symptoms. As my parents aged and developed health issues, I became more aware of the flu being a serious concern and not just a pesky ailment.

I’ve been reading a lot about how bad this year’s flu season is in the U.S. The flu deaths of children as well as young adults who were otherwise healthy have captured news headlines. While older people are more susceptible to experiencing severe symptoms when it comes to the flu, this year’s dominant strain is particularly of concern.

The H3N2 flu strain has reared its ugly head this season, STAT reported. Referring to H3N2 as the “problem child of seasonal flu,” this strain tends to strike seniors particularly hard, and usually leads to a spike in flu-related deaths. While it hasn’t been proven that H3N2 is actually more virulent than other strains, its ability to mutate has made it difficult to create a successful vaccine. Researchers also pose a theory of imprinting, in which a person’s ability to fight off the flu is associated with the person’s earliest experiences with the flu. Since H3N2 first emerged in 1968, our elder population would not have been exposed to the strain during childhood.

Another vulnerable population when it comes to the flu is people with dementia. It can be hard to enforce preventative measures such as washing hands when someone has memory issues. Those in the mid-stages of Alzheimer’s may wander and pick up objects, or put things in their mouth.

In the last year of his life, my father was only partially verbal. If he was experiencing pain or any other symptom, I’m not certain he could have expressed it. Family caregivers are forced to look for secondary symptoms and related behaviors, such as a person’s appetite wanes because they don’t feel well. Certainly things like a cough or runny nose are obvious, but other symptoms may be more difficult to spot. Their throat hurts so they don’t want to consume food. Their nose is stuffy and they can’t smell food, impacting their appetite. They feel exhausted so they don’t want to get out of bed.

Treating flu symptoms of those with dementia can also be difficult. Anything that disrupts the routine can be a challenge for those with Alzheimer’s. My father was paranoid about taking pills or any kind of medication. Caregivers have to be creative when it comes to treatment. Don’t hesitate to take your loved one to the doctor if you are having difficulty managing symptoms. For those of you with loved ones in facility care, be extra vigilant in observing for flu symptoms when visiting, and make sure issues are addressed promptly by staff.

Here’s to hoping we can all stay healthy and avoid the flu this season.

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Taking care of our ‘elder orphans’


Photo: Pixabay

Now solidly middle-age and reflecting more upon my own mortality after the deaths of my parents, aging well is a top concern of mine.

Aging well means something different to everyone, but living independently with as little assistance as possible is a priority for me.  I read an article about “elder orphans,” a term used to describe older people who live alone without a support network. As our society has moved away from the nuclear family model, and more people are deciding not to have children, the number of elder orphans will likely grow dramatically over the next several decades. The author of the article believes that baby boomers will also experience an uptick of elder orphans.

Not only are modern families smaller, but members are more likely to be spread out geographically, which can complicate caregiving situations. Women, traditionally the caregivers in the family unit, have demanding careers that limit their ability to be caregivers. (Though we know there are plenty of family caregivers who work full-time and care for a loved one, which can lead to burnout.)

Some people, like my mother, become an unwilling elder orphan after their spouse dies. My mother was able to take care of herself until the last few months of her life, but she did not enjoy living alone. She missed the daily companionship and experienced loneliness living in a rural community without friends or family nearby. Yet even when she was still in good health, I couldn’t convince her to visit the community senior center.

So how can we better take care of our elder orphans? I’ve written before about aging in place and how some communities are being proactive in addressing the needs of their aging population. Infrastructure needs like housing and transportation is integral, but so are communities with residents who have an awareness and dedication to helping their elders age safely. Programs like Meals on Wheels isn’t just about receiving food, but serves as the only regular safety check that many older people living alone receive. The frigid winter weather has encouraged people to check in on their elder neighbors, and that’s something we should be doing all year long.

While we can’t predict how our own health issues will impact our hopes of aging well, we can plant the seeds now to create a safe and welcoming environment for elder orphans.



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Challenges Facing Alzheimer’s Caregivers

Let’s start 2018 with getting back to basics. I come across so many family caregivers who have received no education or training about their loved one’s condition. If the medical community doesn’t have time to address this, then we will have to teach each other.

Here’s a good overview of Alzheimer’s disease from The Diary of an Alzheimer’s Caregiver blog. I especially like the infographic from that offers dementia caregivers alternative, healthier responses when they are faced with challenging behaviors.

via Challenges Facing Alzheimer’s Caregivers — The Diary of An Alzheimer’s Caregiver

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Caregiver wishes for 2018



Now that we have moved into post-Christmas, it’s time to think about 2017’s wins and losses and what we hope to accomplish in the new year.

Despite 2017 being a difficult year for many, it was not without successes when it comes to caregivers. In Hawaii, the Kupuna Caregivers Act was passed, making it the first state to compensate family caregivers who also work full-time. In 2018, as the law is fully implemented in the state, all eyes will be on the success or challenges the legislation generates.

Earlier this month, the RAISE Family Caregivers Act was passed. The bipartisan legislation will create a national strategy to support family caregivers, by providing training and better access to services. It remains to be seen how the act is implemented, once President Trump signs the bill into law. Caregiver advocates are hopeful it’s a step in the right direction.

Even with the threat of looming funding cuts under the new administration, Alzheimer’s research received a $400 million increase in funding as part of the National Institutes of Health budget.

As for challenges, Alzheimer’s research had a disappointing year overall, as admitted by those in the field. Major Alzheimer’s research studies failed to bring about the results and answers experts hoped. But scientists have many areas of Alzheimer’s to still explore, and hopefully the additional research funding will help with this cause in 2018.

The threat of cuts in health care loom large in 2018, though it’s all still up for debate. However one may feel about entitlement programs, cuts to Medicare and Medicaid will hurt caregivers. The uncertain status of the Affordable Care Act also is a concern for caregiver advocates. Health care should be a bipartisan issue, but it is sadly the opposite in the current political climate.

Speaking of controversial issues, immigration also has a direct impact on caregiving. With the current administration’s immigration crackdown, there will be an even greater shortage of paid caregivers than expected over the coming decade. There was already a predicted shortage because of our rapidly aging population, but couple that with a decrease in the immigrant population, and you have the recipe for a disaster. Again, however one may feel about the issue, immigrants provide a great amount of underpaid care to our nation’s elder population. Most Americans will not work for the pitifully low wages caregivers earn.

In 2018, I will be following legislation and programs supporting caregivers that are implemented at the state level. Universal Family Care is being discussed in some states, and I hope the conversation around how to best support family caregivers continues to grow next year.

What do you hope to happen in your state in 2018 to support paid and family caregivers?

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