It was an honor to be featured on the AlzAuthors blog this past week. I encourage you to check out the other authors writing about Alzheimer’s and other dementias that are a part of this group. Sharing our experiences is so important!
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)
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.
Filed under Awareness & Activism
Respite in the woods
Sunset in Ellijay, Georgia.
I just returned from a 5-day trip to the north Georgia mountains. It was a nice getaway, with a mix of rainy days to crystal clear nights with the sky full of stars. In the past, I haven’t been able to enjoy these trips as much because I was worried about my parents as their health declined.
Back then, cell phone service was very iffy in the woods, and being able to reach them required some effort. Calls would drop often and my mother always thought I was hanging up on her, haha. (While there were many times I wanted to, I only hung up on her a couple of times in my life.)
I am always in awe of the majesty of the mountains, from the beauty of the sunsets, to the way the rains strikes the roof of the cabin to the blanket of stars overhead on a clear night. But life cycles are also on display in the mountains. The hawks swooping and soaring effortlessly overhead were seeking their next kill. I took a short hike and came across so many fallen trees. Taken out by severe weather or just old age, they will decay until they return to earth or are removed by developers looking to build a new cabin.
Sometimes it helps to watch nature do its thing, and know that many of the same rules apply to us. I think especially for those grieving the loss of a loved one, there is comfort in observing the cycle of life and how there is always something new to take the place of what is lost. A dogwood tree was just beginning to bloom near the cabin, a sign of the rapidly approaching spring; a tree stump became home to abundant fungi.
It’s these moments that I get to fully enjoy now that makes me realize how difficult it is for caregivers to truly unplug. Caregivers are always on edge, awaiting the next calamity. Even if you know your loved one is receiving good care while you are away, you never know when a medical crisis might arise. After awhile, it becomes your new normal.
I hope that my fellow caregivers will get a chance to enjoy a real respite soon.
Filed under Memories
A gun on the farm
Pixabay
With gun rights and gun control being the hot topics of discussion after yet another mass shooting, it reminded me of a story from my mother’s childhood that fortunately did not end in tragedy.
My mother was raised on a farm, and it was not unusual for farm families to own a gun. Typically a rifle or shotgun was kept, sometimes to put down sick animals, or to kill rabid animals or scare off a bobcat. Hunting also was a popular pastime and source of food for the family. While human prowlers weren’t as much of a threat back then, in a remote farmland area, you best be prepared to defend your family. Having a gun was a practical decision in my mother’s family.
One night when my mother was a young girl, she must have gotten up in the middle of the night, or perhaps was sleepwalking, and ended up in a rocking chair in the living room. Family members heard a noise and the gun was retrieved as a precaution. When my mother was discovered, everyone heaved a sigh of relief and had a good chuckle the next morning.
My mother told me that my grandmother was not as amused, as having weapons in the house made her nervous. She worried about what could’ve happened to “little Janie” if my mother had been mistaken for an intruder. But as the matriarch of a large farming family, she understood the purpose for such a weapon and reluctantly accepted its presence in the home.
I’m just as grateful as my grandmother that the story had a happy ending.
Filed under Memories
How can we prevent deadly encounters between those with dementia and law enforcement?
Pixabay
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.
Filed under Awareness & Activism
The value of living in the present
Those of us who have dealt with Alzheimer’s in our families know just how particularly cruel this disease can be. Much of that has to do with the loss of the person, their personality and memories. They become a shell of the person they were and it can be difficult for family members to adjust. This thoughtful blog post below highlights the benefits of living in the present, as so many people with dementia do.
“Memories warm you up from the inside.” This was written in fancy cursive on the wall of a memory care community that had invited me to do a staff in-service. I’m not sure who decided this was a great quote to post on the wall in such a setting. I’d like to ask them about […]
via The Importance (Or Lack of Importance) of Memories in Dementialand — Welcome to Dementialand
Filed under Memories
Lessons on life from dying children
File image via Pixabay. (Not Dr. McAlpine.)
A Twitter thread by a pediatrician has been making the rounds lately, and for good reason. Dr. Alastair McAlpine asked some of his terminal pediatric palliative care patients what has mattered the most to them in life, and what has given their lives the most meaning. The children’s answers are both simple and profound, and something we adults should take to heart.
The things so many of us are hooked on, such as television or social media, did not make the kids’ important list. Family, pets, books and ice cream did rank high. These young souls whose lives will most likely be cut short barring a medical miracle shared a couple of values they found to be the most important. Kindness and a sense of humor made the list, not wealth or celebrity.
I encourage you to read the short thread on Twitter. At the end, Dr. McAlpine offers a takeaway for all of us.
We could all use a reminder to let go of negative thoughts and regrets and focus on the truly important people and things in our lives.
At the very least, we can commit to enjoying more ice cream.
Filed under Memories
Self-help book giveaway
As a caregiver, my resolution was just to survive another day. Whether you are maintaining your resolutions so far this year or are in need of some inspiration, these self-help books may be just what you need.
Almost two dozen self-help books, including my essay collection, The Reluctant Caregiver, are available for free via Instafreebie. There are books offering advice on everything from finances, health, relationships and even hair.
Book giveaway: Self-help books to jump-start the new year
If you do download and read The Reluctant Caregiver, I’d appreciate an honest review on Amazon or Goodreads. Of course, I’d love to hear your thoughts here as well. I consider family caregivers to be the best critics, because they’ve lived the life. Thanks for reading!
What is your favorite self-help book? Is there a self-help book for caregivers that you recommend?
Filed under Memories
How can we improve doctor-family caregiver communication?
Pixabay
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.
Filed under Awareness & Activism
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.
Filed under Awareness & Activism
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The Memories Project 