There is more interesting research going on in the world of Alzheimer’s. Scientists are examining whether the brain’s infrastructure plays a role in a person’s risk of developing Alzheimer’s. A damaged vascular system in the brain could develop cognitive performance issues, akin to an aging power grid that struggles to deliver power to a city, according to the research discussed in this Stanford Medicine Scope blog post.
In looking at a genetic atlas of the brain, researchers found that the “majority of the top Alzheimer’s risk genes are significantly expressed in the [brain’s] vasculature.” If you want to do a deep dive into the research, take a look at the study published in Nature.
The new technology used to create a genetic atlas and the accompanying discoveries give Alzheimer’s researchers new avenues to explore. No cause and effect has been established yet between brain vascular damage and Alzheimer’s risk, but there will now be additional research conducted to examine this area.
What could this mean for potential treatment of Alzheimer’s disease down the road? According to the Tony Wyss-Coray, who runs the lab where the research was conducted, treatments that could target the brain’s vascular system may be more easily accessible as the blood-brain barrier presents a challenge when it comes to getting drugs into the brain.
I can relate to these thoughts when it came to my dad’s journey with Alzheimer’s. If you are struggling as a dementia caregiver, know that these thoughts are common, so don’t judge yourself harshly.
When you love someone who is living with Alzheimer’s disease, you often feel alone in your thoughts and feelings. You may wonder if anyone else thinks the same thing or feels the same way.
I hope to reassure you and normalize the thoughts caregivers may have while caring for a loved one with Alzheimer’s. These are 9 thoughts I had while my mom was living with Alzheimer’s.
1. This is so unfair. Why is this happening to me?
2. She doesn’t deserve this. Why is this happening to her?
3. No one will ever understand what I am going through. I’m all alone.
4. I should be grateful that I still have my mom, but I just want my old mom back.
5. Am I a good daughter? I never feel like I’m doing enough.
6. Why doesn’t this person help out more? They know how hard this is. I…
I’m a big fan of the Netflix show “After Life” created by and starring Ricky Gervais. While the subject matter and profuse profanity make it a show that not everyone will enjoy, I find its take on death and the grieving process refreshing and poignant.
The third and final season debuted this month and I was blown away by one scene in particular, which felt like my mother was speaking to me from beyond the grave.
As I’ve written about extensively on this blog and in my book, The Reluctant Caregiver, my mother was reluctant to discuss any end-of-life issues, but she did give me a poem she had copied by hand and said she would like that read after she died. She didn’t want any service and she chose cremation over burial so it was left to me, her only child, how to honor her wishes.
The poem she chose is the poem that is read during a very moving scene in the final season of “After Life.” When the actress began reciting the poem, I almost jumped out of my seat and my breath caught in my throat. The poem is fairly well-known but still, what are the chances that the poem my mother chose was the one that was recited on a TV show?
I chose to honor my mother’s wishes by not only reciting the poem after her death, but having it imprinted on her urn. You can read the poem below.
USS Theenim (AKA-63) in 1946. Source: Official U.S. Navy Photo via Wikimedia Commons
I’ve spent the decade since my father’s death piecing together a timeline of his life. While I know my father discussed the details of his freighter trip from the UK to America during my childhood, I sadly have forgotten most of those details. It bothered me I couldn’t learn more about the ship that he was on, but my initial searches turned up dead ends.
Then I took another look at his naturalization records on Ancestry.com, and discovered the name of the ship, SS American Inventor, was printed right on the form! I don’t know how I missed that initially. At first I turned up little information with the ship’s name, but then discovered that the ship had changed names over the course of its service.
The ship was originally christened the USS Theenim and functioned as a cargo attack ship during WWII, according to NavSource. (Reports say the name was a misspelling of Theemin, a star in the constellation Eridanus.) It served in the Asiatic-Pacific Theater during wartime and earned one battle star. After being decommissioned, it began its merchant service duties where it became the SS American Inventor. The ship’s name changed a few more times before it was sold for scrapping in 1970.
It was neat to see the images of the ship on NavSource. The very last image is of the ship in New York City in the mid-1950s. My father arrived in New York in 1957, so it was really neat to see an image of the city’s skyline during that era, to have a better understanding of the first glimpses of America my father saw on the ship. What an exciting moment for my father, who was just 25 years old and about to step foot in the country he would adopt as his second home.
I hope you had a peaceful holiday season. Mine was spent mourning my beloved cat Rosalie, but the holiday break allowed me time to honor her memory in various ways. Her urn arrived this week, and Katie Patton of Blocks from the Heart has done such a magnificent job in capturing Rosalie’s spirit.
And to usher in the new year, I took the plunge and adopted a pair of tuxedo cats named Dorian and Serena. They are young, just a year and a half. I do feel like Rosalie’s untimely passing was a signal from the universe that an opportunity was presenting itself to welcome a new energy into my home and my life. It was a rude awakening, but one that I hope will inspire new endeavors into my caregiving advocacy work. Adopting young cats is also a good lesson in letting go of routines and looking at things from a new perspective … like when a kitty climbs to the top of the kitchen cabinets!
Serena and Dorian
As for vision … I attend a monthly women’s healing circle that involves a variety of spiritual disciplines and meditations. It’s been a virtual respite during the isolation of the pandemic. Each year, the teacher draws a spirit word for each participant, and mine for 2022 is vision. I’m interested in exploring that concept.
To kick off the year, I’m taking a course in children’s book writing. I have an idea for a children’s book that would feature my rescue dog Murphy’s story and connect it to children who have also experienced trauma. I don’t know what will come of it, but I think it is good to flex the writing muscles in a new direction.
On the legislative front, I hope some of the caregiving initiatives can be salvaged from the BBB plan. I know I sound like a broken record, but caregiving issues deserves bipartisan support because it’s something that touches all of our lives, regardless of political beliefs. Caregivers, from frontline hospital and nursing home workers to family members tending to loved ones at home, have sacrificed so much and it’s well past time that we as a society support better funding so that they get the support they need.
I had to say goodbye to my beloved Rosalie two days before Christmas. She went into respiratory distress and a large mass was found on her trachea, which was almost entirely blocking her airway and ability to breathe. Because of its location, her age, and her condition, there were no realistic treatment options. I decided to let her go while she was still under anesthesia from the diagnostic procedure so she could slip out of this world as peacefully as possible.
Rosalie came into my life at the worst of times (my mother dying) and departed during another tough period of my life. I was fortunate to get six years with her delightful spirit. She was by far the easiest cat I’ve ever cared for and very affectionate. While I’ve loved the timid cats that I’ve adopted over the years, Rosalie was not shy at all. Nothing much seemed to spook her. She lived every day soaking up the simple pleasures of life (sitting on the heat vent or napping on the heated blanket during the winter, enjoying food, being petted, knocking her favorite crinkle ball toys under the couch) and I would marvel at how content and relaxed she was no matter what strife I and/or the world was facing.
I may have jinxed her by thinking she could be my “20 year old cat,” because she had the calm and happy-go-lucky demeanor that centenarians often have. Alas, cancer claimed her just a month after her 15th birthday.
The day I adopted Rosalie I put aside my normal common sense and went with my gut instinct. It was just days after another one of my beloved cats had died and many people would have felt it was too soon to adopt another. The weather that day was dreadful and for any other event or task, I would have opted out. Navigating through violent thunderstorms, I arrived at the shelter and met with Rosalie just minutes before another adopter arrived asking about her. From that fateful beginning, Rosalie and I forged a special bond.
She taught me that sometimes rules and traditions are meant to be broken and she could have taught a master class in self-care. I will be forever grateful that the universe brought her into my life.
It has been 10 years since my father’s death. So much has happened in the past decade, but I’ll never forget where I was when my mother called with the worst news of my life, in the middle of the newsroom at the Atlanta Journal-Constitution. I had been waiting for that awful call for quite some time, and some part of me wished for it, because it pained me so much to see my father suffering in the late stages of dementia. But of course there was no immediate sense of relief upon my father’s passing, just sadness and regret.
I do still carry feelings of regret and guilt to this very day, and probably always will. I discuss this at length in The Reluctant Caregiver, and urge others not to judge themselves too harshly. In that spirit, I am taking a look back on what my father inspired me to do over the last decade.
I began this blog, The Memories Project. What began as a way to document memories of my father and process my grief has become the foundation of my dementia and caregiver advocacy platform. I have also met so many fellow caregivers through the blog and am grateful for their wisdom and their support.
I wrote a book, which was a life goal of mine. My collection of personal essays on family caregiving, The Reluctant Caregiver, won a gold medal at the IPPY Awards. An essay from that collection won the Rick Bragg Prize for Nonfiction from the Atlanta Writers Club. A story I wrote about my father, “French Toast,” was included in the Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias collection. I know my dad, a lifelong lover of books, would be proud.
I finally made it to Ireland and visited my father’s hometown of Belfast, Northern Ireland. This was at the top of my bucket list and has been one of the best experiences of my life.
The privilege of sharing my father’s story through a variety of outlets, including NPR, AlzAuthors, Caring Across Generations and the Aging in America conference.
The decade since my father’s death has been the most difficult of my life, but also the most rewarding. I hope that you can take time this holiday season to recognize and reflect upon the highs amidst the lows of your own caregiving journey. Give yourself the grace that you deserve.
My father and Aunt Peggy on her wedding day, 1956.
I received a letter from my Uncle Jim this week, updating me on how my Aunt Peggy is doing. She is my father’s youngest sister and has dementia. My father’s side of the family has been decimated by the disease and Peggy has been living with the disease for years. Jim has been an amazing caregiver to her and patient in navigating the choppy waves the disease presents. She is doing as well as can be expected, and is able to take advantage of resources offered by Australia’s stellar healthcare system.
A few years ago, I sent Jim a copy of Chicken Soup for the Soul: Living with Alzheimer’s and other Dementias. A story of mine about my father, French Toast, is included in the collection, but I also thought Jim might appreciate the wealth of information that was shared by the dozens of dementia caregivers who contributed to the collection. In his recent letter, he mentioned the book and the information I shared about my father’s struggles with swallowing in the end stage of the disease. He thanked me for sharing the information and how it had been helpful while caring for Peggy.
Caregiving can feel very isolating. When caring for someone with dementia, that isolation can feel even greater, as friends and sometimes even other family members maintain a distance, not sure how to help or struggling to accept the diagnosis. But in those moments you might be learning something that, when shared with others, can make their caregiving lives easier.
Don’t be afraid to share the lessons you have learned on your caregiving journey. Knowledge is a precious gift and what we learn from fellow caregivers can be more meaningful than what we learn in books.
When the pandemic first took hold in America, the bulk of cases were in urban areas, like New York City. I remember at the time reading some opinions from those in rural areas of the country, who thought that being a spread out population would protect them from the coronavirus. While that may have protected them somewhat during the early period of the pandemic, the trend have now reversed, with rural areas of the country being overwhelmed by an influx of COVID-19 cases.
🚨 Rural Americans are dying of covid at more than twice the rate of their urban counterparts — a divide that is likely to widen.
Vaccine hesitancy and the political influence of anti-vaxxers and covid deniers in rural America is playing a role in the rise of cases from the delta variant, but that is not the whole story. What we are witnessing are the critical deficiencies in the rural healthcare system. People are dying needlessly because there is not enough space, supplies and staffing to care for them. With the country’s elder population increasing over the next decades, this is an issue that needs prompt attention.
I witnessed the challenges facing those needing medical care in rural areas when I was a caregiver for my parents. There were no memory care facilities with available beds nearby, so my father was transferred to Roswell, over an hour and a half away. This placed a huge burden on my mother when trying to visit him, as she didn’t drive and had to take a bus to make the trip. She was so tired after one grueling trip that she fell in the middle of the night and broke her shoulder. When my father became critically ill, he was transferred all the way to Albuquerque, a three-hour trip from where my parents lived. He died without family present, as my mother was preparing to visit him.
When my mother became ill, the local hospital was unable to perform her surgery, so they transferred her to Roswell. She spent the summer there, recuperating from surgery at a skilled nursing facility. Instead of making the trip back and forth to my parents’ home in Ruidoso, I lived out of a hotel in Roswell for that summer, a pricey endeavor but I learned how important it was for me to be a hands-on caregiver advocate for my mother during that recovery period. Her follow-up care had to be carefully arranged once she got back home, because the oncologists only visited Ruidoso a few days a month. After she died, I learned that the oncologist group discontinued serving the area, forcing those with cancer to travel an hour and a half away for treatment.
Many rural hospitals have closed. Equipment and beds are limited. It’s difficult to recruit doctors and nurses to serve in rural areas. Ambulance services have also been impacted, meaning people die because they can’t get to a hospital fast enough. Specialty services and tests often require lengthy travel, a burden for many families. You can see how these issues create a perfect storm when a pandemic strikes. Many rural healthcare systems now find themselves at the breaking point.
People should be able to age in place where they wish, but they should also be aware of the challenges in aging in a rural area. It will take a mix of public and private funds along with innovative minds to fix the issues plaguing the rural healthcare system, but it is essential and we must take the hard lessons learned during these times to advocate for change.
A recent New York Times investigation may be a revelation to some, but not to family caregivers who have loved ones in nursing homes, especially memory care centers. The investigation found that at least 21 percent of nursing home residents are on antipsychotic drugs. “Chemical restraints” have become a convenient method to reduce the hands-on care needed for those with dementia in nursing homes which are chronically understaffed. Savvy (and/or devious) nursing home operators and doctors have found workarounds to circumvent the weak government regulations that attempt to curb this dangerous practice.
This is an issue near and dear to my heart. I’ve written about my father’s experience in a memory care center during the last year of his life. He was given Risperidone, a drug typically given to adolescents with schizophrenia. It turned my father into a zombie and made him unsteady, causing several falls which resulted in ER visits. To add insult to injury, my family was left with owing thousands of dollars for medications used to inappropriately sedate my father.
Here is what I wrote about my dad’s experience with the drug:
I remember the indifferent attitude the doctor at the local hospital had when I questioned the use of Risperdal, which was already controversial even while my dad was still alive. The doctor just shrugged his shoulders and said they had to continue prescribing what the doctor from the nursing home had ordered. He asked me if I knew what it was for and I responded “to make patients like zombies so they’re easier for the nursing home staff to deal with” and the doctor agreed with a laugh. I did not find it funny at all.
Johnson & Johnson paid over $2 billion in fines to settle charges levied by the government that they promoted off-label use of the drug to elderly patients with dementia and even provided kickbacks to doctors and nursing home operators. The massive fine didn’t hinder the practice. The drugs of choice are now Haldol and Depakote, according to the New York Times investigation. Doctors are adding a diagnosis of schizophrenia to nursing home residents with dementia to get around government regulations. Haldol is used to treat schizophrenia and therefore doesn’t have to be included in the mandatory reporting of antipsychotic use that nursing homes must provide to the government.
The underlying problem to the overmedicating of nursing home residents with dementia is staffing shortages. If facilities were adequately staffed and had special training in how to care for those with dementia, the need to sedate residents would be alleviated. Families aren’t going bankrupt just so there loved ones can be turned into zombies through chemical restraints. Nursing home operators get access to medications that a family doctor would likely balk out if a family caregiver asked for it to manage their loved one at home. The government’s response continues to be insufficient.
My advice is that if you have a loved one in a memory care center, review their medication list on a monthly basis. If you are not comfortable with your loved one being on a particular medication or you witness alarming changes in your loved one’s physical or mental state, speak up. If you are looking to move your loved one with dementia into a memory care center, ask about their use of off-label medications. Ask that they seek your permission before prescribing such drugs. We must advocate for our loved ones to be treated humanely and not as an experiment to sedate into submission.
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The Memories Project 
