A son’s moving musical tribute to his mother with Alzheimer’s goes viral

If you’ve spent time on social media over the past month, you may have seen a video of a touching performance by a young country musician from Iowa named Jay Allen. While Allen may not have been a household name before, he certainly is now.

Allen now lives in Nashville but on July 28, he was performing at Dubuque County Fair in his home state. He had a special guest, his mother, who has early-onset Alzheimer’s. Sherry Rich was diagnosed at just 53 years old, and it has been devastating for the entire family. It prompted Allen to write a song, “Blank Stares.” It includes such moving lines as, “If I could only seal the cracks you’re slipping through,” and “Deep down somewhere I swear I still see you/Between the blank stares.”

Allen performed “Blank Stares” at the fair with his mother by his side. A fan captured the touching moment on video, and it was posted on Facebook, where it quickly went viral. The video has been viewed over a million times.

While heartbreaking, it’s wonderful to have young people like Jay Allen raising awareness about this terrible disease. I so appreciate him talking about the financial hardship that Alzheimer’s can cause, because that’s a topic that is not discussed enough. He has touched many people, and proceeds from “Blank Stares” are raising money for Abe’s Garden, a memory care center in Nashville.

If you’ve seen the video or heard the song, I’d love to hear your thoughts.

Advertisements

Leave a comment

Filed under Awareness & Activism

“Into the Night: Portraits of Life and Death” a fascinating documentary

Leave it to me to find the heartbreaking, gut-wrenching yet powerful documentaries. While films about dying are always an emotional experience for me, I also find them thought-provoking, which is why I keep watching them and sharing with others.

The latest film I watched is titled, “Into the Night: Portraits of Life and Death.” It aired on PBS earlier this year, but I caught it on Netflix. What I liked most about the film was the diverse range of subjects who were interviewed about their perspectives on death. From people of faith to scientists to a former member of an Islamic extremist group, those interviewed were candid about their thoughts on the meaning of life, death and the afterlife.

I loved the imagery captured in the film, such as a son finding an acorn in the pants pocket of his recently deceased father, or a favorite family photograph of a parent and child on the shore of the beach. There was also an interesting discussion of near-death experiences.

One of my favorite death positive advocates, Caitlin Doughty, is also interviewed for the film. A traumatic brush with death as a young child greatly influenced her life.

The most moving segments were with those who were actively dying. Anyone who has spent time with a dying person knows they often offer an insightful take on their imminent demise. Some people fight death until the very end, but others make their peace with death in order to better appreciate the time they have left.

The overall message I took away from the film is that each of our lives are unique stories, and all stories must come to an end eventually.

Watching such a film made me reflect upon my own views of death, as well as those of my parents. My father, a staunch Catholic, had an intense fear of death. Did his dementia offset that fear, or intensify it? There is no way for me to know. My mother, on the other hand, had a more positive end of life view. She thought we “go to a good place, and a right place,” based upon whatever our views are of the afterlife.

For me, I’m more afraid of terminal disease and the dying process than death itself. I dread the idea of pain, misery and loss of self-control. I also dread the loss of mental faculties, but know that is a distinct possibility, as Alzheimer’s is all over my family tree. I admire those that make peace with death, as I think it is the best way to go. At some point, the fight to live is over, but I don’t see that as giving up. I see that as focusing remaining energy on the life you have left.

If you’ve seen the documentary, I’d love to hear your thoughts.

2 Comments

Filed under Awareness & Activism

Alzheimer’s and agitation: How caregivers can cope

hand-s-words-1438401-639x349_edited

Photo by Gabriella Fabbri/Freeimages

Among the most disturbing and difficult behaviors for caregivers of those with Alzheimer’s to manage is agitation and aggression. Unfortunately, agitation and aggression are quite common symptoms, with almost half of those with Alzheimer’s exhibiting such behaviors, according to a 2008 study.

infographic-4_editedI witnessed the effects my father’s aggressive behavior had on my mother. Even though my dad was slim, when agitated he proved to be far more than my mother could handle. He still could pack a punch, literally, as when he hauled off and hit my mother in the chin with his fist. He claimed he was shadow boxing and she got in the way.

My father was eventually placed in a memory care center, in part due to his aggressive behavior.

Over the years, I’ve learned tips on how to best manage Alzheimer’s agitation and aggression. The key is that not every solution works for every patient; each case is unique. Here are some suggestions I found helpful:

  • Determine if agitation follows a pattern: For some people with Alzheimer’s, they become more agitated at dusk (sundowning) or during specific tasks, like getting a bath or taking medication. (For my dad, it was the bedtime routine.) Consider that the task may be frustrating to complete for the person with Alzheimer’s. If a certain event is a known trigger, it can be helpful in reducing agitation. Distract with an activity to reduce the effects of sundowning. Have an aide help with bathing. Try to disguise medication in food or a smoothie if possible.
  • Create a calm environment: Those with dementia tend to do best in calm environments that reduce the risk of overstimulation. Noise in particular can be overwhelming. Try soothing, familiar music and lights that are bright enough to maintain safety in the home but that don’t create a harsh glare. Limit caffeine if that is determined to increase agitation. Natural remedies, such as soothing teas and herbs may be helpful, but always check with a doctor first.
  • Stay active: For those with Alzheimer’s who are ambulatory, exercise can help reduce aggression and agitation. My dad loved to take long walks, and as his dementia progressed, he spent more time indoors, which was a source of frustration for him and increased his agitation. For those who have difficulty walking, doing simple household tasks like folding towels can be useful in preventing boredom, as can activities like simple jigsaw puzzles and coloring books.
  • Medication: While medication is not effective for some patients, it can be a useful tool when combined with the above suggestions. Consult your loved one’s physician to learn about options. Consider enrolling your loved one in a drug trial if they qualify.

One important factor to keep in mind is that agitation that appears suddenly may be related to a physical ailment your loved one is experiencing but cannot communicate their discomfort. For example, urinary tract infections are common in those with dementia, and can create very uncomfortable symptoms, which can increase agitation. A new medication can also increase aggression. Share any concerns with your loved one’s doctor.

What methods have you found to curb aggression and agitation in those with Alzheimer’s disease?

Leave a comment

Filed under Awareness & Activism

6 Skills You Need to Have as a Caregiver

Great list, these are definitely important skills to have as a caregiver. I struggled with a few, but excelled at organization and problem solving.

The Purple Jacket

Whether it’s a career you want to pursue or something you want to do to use your time to give back, being a caregiver is both a challenging and rewarding experience. People do it every day all over the globe to make sure their loved ones and others get the care and help they need. It’s a selfless job for anyone who wants to take it on, and like all other jobs, you should have certain skills before you step into the role.

Beginning your journey as a caregiver before you know if you’re ready for it would be a major problem. Not only would you be putting yourself in a bad position, but you’d be preventing someone from getting the quality care they need. Read on to see which skills are most important for you to have as a caregiver.

Find out what you can do to improve those…

View original post 674 more words

Leave a comment

Filed under Memories

Bittersweet birthday memories

birthday-cake-380178_640

Pixabay

For me, July will forever be associated with birthdays. My mother’s birthday was July 6 and my birthday is July 19.

While birthdays should be filled with happy memories, ever since the death of my parents, I’m left with bittersweet memories. There’s a profound quote in the Netflix documentary, End Game, which is about end-of-life care and hospice, that touches upon what I’m feeling this week.

“Suffering is the wedge, the gap between the world you want and the world you got.”

Even though I didn’t spend my birthday with my parents as an adult, they always sang Happy Birthday to me over the phone. It was a fun tradition, and each year Mom would tell me how they practiced all week to make it special. My parents both had some musical talent, with Dad especially fond of singing in the style of his favorite crooner, Bing Crosby.

The year before my father was placed in the memory care center, my parents performed the best rendition ever of Happy Birthday. My dad was in high spirits that day, and even though he was in the middle stages of Alzheimer’s by then, he hadn’t lost his ability to sing or to ham it up. He continued singing, performing a medley of classic show tunes before Mom was able to get the phone back from him. At the time I thought, “I wish I had recorded this!”

As my birthday approached the next year, I was visiting my parents and Mom and I made the trek to the memory care center to see Dad. He was mobile but heavily medicated. I didn’t expect any birthday singing, but Mom insisted. I was torn about recording it, but I knew in my heart that it would be my last birthday with my father alive. Little did I know then that my mother would be in a care center a year later recovering from cancer surgery.

Even though I knew it would be painful, I decided to record it. I’m glad I did, even though it is heartbreaking to watch. (I rarely share this video, but am making an exception here.)

As to the quote about suffering, what I wanted was the sublime Happy Birthday performance from the year before. What I got was my father, addled with medication and his brain ravaged by Alzheimer’s, trying his best to perform one final time, with my mother trying desperately to be upbeat.

Ultimately, both memories are gifts. They are both filled with love.

 

 

 

 

4 Comments

Filed under Memories

Stay or move, that is the question

I was recently introduced to a resourceful website called StayorMove.org. The site focuses on what is are the most crucial questions as we grow older, such as do we stay put in our current homes or do we move on to a different location or live in an assisted living facility?

It’s questions we all should ask ourselves, but many people wait until a health issue makes the decision for them. That’s why I like the approach found on the StayorMove website, which is easy to navigate and uses a series of videos to address the pros and cons of a variety of housing options.

>>READ MORE: Can America afford to age in place?

I also appreciated the fact that growing old in a rural environment was addressed. Those who follow this blog know this is an issue that’s important to me, because my parents’ health care was compromised by living in a small town with limited medical resources. They have a series of videos on the Village movement, which seeks to connect neighbors and volunteers to help elders age in place, while valuing the contributions of elders to the community. I’d love to see this concept expand.

The videos are brief but informative, and hopefully will encourage the “stay or move” conversation to continue. The more people are educated, the better decisions they can make about their own aging and housing choices.

Leave a comment

Filed under Awareness & Activism

Fireworks and Sundowning – Not a Happy Fourth of July — The Imperfect Caregiver

A good reminder that not everyone reacts well to fireworks, including people with dementia. (This can also apply to people with autism and pets, among other groups.) Have a safe and happy Fourth of July!

As if sundowning weren’t a challenge for those with dementia and their caregivers we add fireworks to the mix on July 4th each year. A person who once loved fireworks may respond differently now. For someone with dementia, the loud pops and explosions can trigger memories of wartime experiences causing a return or worsening of […]

via Fireworks and Sundowning – Not a Happy Fourth of July — The Imperfect Caregiver

Leave a comment

July 3, 2018 · 7:16 am