Tag Archives: Alzheimer’s

Bittersweet birthday memories

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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.

 

 

 

 

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AlzAuthors marks 3rd anniversary with book sale and giveaway

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AlzAuthors June book sale.

I’m so excited to announce this book sale and giveaway. The AlzAuthors group is marking its third anniversary! I’m honored to be a part of this group of authors who have written books about Alzheimer’s and dementia.

In addition, June is Alzheimer’s and Brain Awareness month, so it’s a good time to read more on these important topics.

Check out the link below to learn more about the book sale and how you can register to win a collection of books from AlzAuthors, including The Reluctant Caregiver.

via Happy Anniversary AlzAuthors! Alzheimer’s & Brain Awareness Month Book Sale & Giveaway

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The cruel progression of Alzheimer’s

While the progression of Alzheimer’s is different for each person, there is a progression, and it’s a heartbreaking one.

On Sunday, 60 Minutes aired its latest installment following the life of Carol Daly and her journey with Alzheimer’s. This year marks 10 years since the show first made contact with Carol and her husband Mike, a former NYPD officer.

It’s gut-wrenching to watch the mental and physical decline of Carol over the years, and how much Mike suffers as a caregiver. But Carol’s story is  important to tell, to help raise awareness of this devastating disease to a mass audience. I am grateful for Mike and Carol for allowing cameras to document the cruelest aspects of Alzheimer’s.

Watch the full 60 Minutes segment

The segment touches upon important topics, such as the high cost of Alzheimer’s caregiving and the lack of financial support, along with the physical and emotional toll dementia caregivers takes on loved ones. You know Alzheimer’s is a beast when the former cop tells the CBS correspondent that caregiving is the toughest job he’s ever had.

The sad truth of course is that there are many Mikes and Carols out there, fighting their own battles with dementia. And that’s why we must do better, as a government and as a society, to help families caring for a loved one with dementia.

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Dementia communication tips

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I love the approach to this list, written by Dr. Elaine Eshbaugh who runs the blog, “Welcome to Dementialand.” It’s not necessarily for those of us who have been through the challenges of being a caregiver for someone with dementia. These simple, smart tips are for “everyone else.” Relatives, friends, nursing home staff and just about everyone could benefit from learning how to better communicate with those with dementia.

Read the list: Tips on Communicating in Dementialand

One of my favorite tips is: “Minimize competing stimuli.” Those with Alzheimer’s and other forms of dementia can be easily overwhelmed. It made me think back to my father visiting me at the casino resort, and how I instantly realized what a poor choice that was, as I explain in my book, The Reluctant Caregiver.

“Sensory-friendly” is a concept that I see being implemented for those with autism. I think similar steps can be taken to make things “dementia-friendly.”

via Tips on Communicating in Dementialand

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

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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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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

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This year’s bad flu season even worse for seniors

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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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