Tag Archives: Alzheimer’s

Touch in Dementialand (aka The Huggers and the Non-Huggers) — Welcome to Dementialand

I’m sharing another post from the wonderful series that Welcome to Dementialand has written. This one really hit home with me, because my dad was definitely a “non hugger.” He was never very demonstrative, even before dementia, but when my mom would visit the memory care center, and she would try to hug him goodbye, he would admonish, “No more hugs!” My mom tried to joke about it but I know it hurt her.

That being said, it is very important to recognize and honor the level of touch a person with dementia demonstrates they want. There are many factors involved, as the post explains.

dad-last-photo

The last photo of Dad and I together, July 2011.

This is the second of a series of five posts about the senses in Dementialand. Today we focus on touch. The issue of touch, or tactile stimulation, for those with dementia is complex. An entire book could be written on the topic, and I will be clear that this post is not a complete summary of […]

via Touch in Dementialand (aka The Huggers and the Non-Huggers) — Welcome to Dementialand

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Will a dementia wonder drug suffer from price gouging?

color pills

If and when a medication that reverses and/or prevents dementia arrives, will anyone but the wealthy be able to afford it? I’ve been pondering this question ever since the pharmaceutical company Mylan was roundly criticized for drastically increasing the price of EpiPens, the common treatment used for severe allergic reactions.

As with Turing Pharmaceuticals and its 5,000-percent increase for its toxoplasmosis treatment Daraprim, Mylan issued a significant price hike for a drug that had been on the market for quite some time. But what about new drugs that are medical breakthroughs for diseases that have proven elusive to treat?

Let’s face it, a medication that could effectively treat dementia would be one of the major medical breakthroughs of modern times. (Of course we must consider that there are several forms of dementia, so a medication that can target Lewy Body Dementia may not work in Alzheimer’s patients, and vice versa. )

Focusing on Alzheimer’s disease, the demand for a proven effective treatment is going to be huge. In an NPR interview about how drug companies price their products, an expert reveals the main factor is how much are people willing to pay for the drug. The interview focuses on Gilead Sciences and its drug Sovaldi, which can cure hepatitis C in most cases. The medication was much more effective than anything else on the market at the time, and hepatitis C can cause serious health issues if left untreated. The medication only needs to be taken an average of 12 weeks, so the price per pill was higher than it would have been for a treatment that took longer. You may have seen the headlines, “A $1,000 pill.” It was true that Sovaldi was priced at a total of $84,000 per bottle when it launched in 2014, though thanks to competition and public outcry, it costs about half that now.

So how much do you think families who have a member battling Alzheimer’s will pay for a medication that could restore their loved one’s sanity? It’s easy to say that a cure is priceless, but in reality, there is a price tag on everything. Perhaps the more interesting question is if the government should step in and regulate prices in such cases, in the name of public health.

I know that if an Alzheimer’s cure pill had been available while my dad was alive, at the prices listed above, we would not have been able to afford it unless Medicare paid for most of it. While I am a firm believer in the free market, I also don’t think any family should have to let a member die because they can’t afford medication.

What are your thoughts? Should medical breakthrough drugs be more heavily regulated to ensure access to the general population?

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Dementia’s communication mysteries

I have found Kay Bransford’s blog series on “things never to say with someone with dementia” enlightening and wanted to share. Much of it I can relate to through my dad’s dementia, but there are certainly things I wish I could have done differently, if only I had known sooner. I’m passing along these words of wisdom from a dementia caregiver warrior in hopes it will help another family going through a similar experience.

When someone with dementia is silent, it does NOT mean they don’t understand you.

via Don’t assume they can’t understand you because they are silent. — Dealing with Dementia

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Legendary coach Pat Summitt gone too soon

Even if you are not a women’s college basketball fan, you probably would have recognized the former Tennessee Vols coach and her intense sideline expressions. Pat Summitt, the winningest coach in collegiate sport history, has died from Alzheimer’s complications at the age of 64.

Though early-onset dementia is usually more aggressive, I am still surprised at how quickly the disease claimed Summitt.

Word of her declining health spread on social media over the weekend. After being diagnosed with early-onset Alzheimer’s in 2011, Summitt retired from coaching in 2012 but was an active and passionate  Alzheimer’s activist. Over the last year or so, she had made less public appearances, but I had no idea her health had declined so significantly.

Again, even if you don’t care about sports statistics, Summitt’s record was absolutely amazing. Summitt amassed the most successful coaching career in collegiate history with her head coaching record of 1,098 wins and 208 losses, earning her an impressive .841 win percentage. That’s best college coaching record, male or female.

Known for her fierce competitive streak and steely-eyed intensity, players remembered Summitt as a tough but gifted coach who encouraged them to give their all in each game.

In response to her Alzheimer’s diagnosis, Summitt said, “There’s not going to be any pity party and I’ll make sure of that.” After the end of her coaching career, Summitt worked tirelessly to raise awareness for Alzheimer’s by establishing The Pat Summitt Foundation.The Pat Summitt Alzheimer’s Clinic at the University of Tennessee Medical Center is scheduled to open in December.

Summitt’s passion and dedication will be missed on and off the court. I hope her death at such a young age will at least make people take note that Alzheimer’s is not just an “old person’s” disease, and that it can claim the lives of even the toughest fighters among us. (Though one could argue that death is victory over Alzheimer’s.)

May she rest in peace, and my thoughts are with her son Tyler and the family.

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Gratitude on Father’s Day

 

It was an emotionally exhausting week to be a journalist, with the mass shooting in Orlando yet another example of America at its worst. But as always is the case in these national tragedies, stories emerge that show America at its best: brave, compassionate, able to put aside differences to help others in need.

A father in Seattle talking to his 8-year-old daughter about the Orlandodad-joy-sm incident was surprised when she innocently asked, “Do the fathers still get a Father’s Day card?”

That spurred a project where 49 Father’s Day cards were created for each father of a victim in the Orlando shooting. The city got involved and over 300 people signed the cards.

It’s a difficult Father’s Day for too many families struck by senseless tragedies.

It’s a heartbreaking Father’s Day for those who have recently lost their fathers.

It’s a bittersweet Father’s Day for those with fathers who have Alzheimer’s disease.

But somehow, somewhere, we have to dig deep and be grateful for what we do have. So I am grateful for a father who has been freed from the prison of Alzheimer’s, who loved me and was proud of me and for all of the old photos and mementos I have of his life that I will treasure forever.

If you celebrate Father’s Day, I hope you are marking the day in a way that is meaningful for you.

 

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Thanking Jim Garner and family

I have been following Jim Garner’s inspiring, heartbreaking, well-documented journey with early-onset Alzheimer’s.

He died in April, five years after his initial diagnosis. His mother and brother also died from the disease.

Garner was only 53 years old, and leaves behind a wife and two children. The family showed remarkable strength, grace and selflessness in allowing the Daily Press to document how Alzheimer’s impacted them over the last several years.

In a struggle for aid, Garner, a veteran, was denied access to government programs, including Medicaid, Medicare and social services. Despite 23 years in the Air Force, he Veterans Administration only offered Garner  a 30-day respite stay in a one-star facility.

A friend of Jim’s wife set up a GoFundMe campaign with her reluctant approval. Karen, Jim’s wife, was overwhelmed by the outpouring of support and donations. The money raised allowed Jim to be placed in a secure memory-care unit for the remainder of his life.

Don’t underestimate the power of a caring community.

Karen wants to dedicate the rest of her life to raising awareness for Alzheimer’s, but knows that she will have to get a job to support her two children. Just by allowing her family’s struggles and triumphs to be documented, she has done so much to personalize the toll that this disease takes on the entire family.

One quote from the interview with Karen really struck me. She was talking about how Jim always was about not sweating the small stuff and taught her to appreciate the seemingly mundane things in life. “We don’t realize how lucky we are that we can empty the dishwasher until we can no longer do it, “she said.

So true.

Wishing the Garners love, peace and healing as they mourn their loss.

 

 

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Dad’s infamous cat rant

In honor of what would’ve been my father’s 84th birthday, I’m publishing the infamous “cat rant” that prompted a viral response back when we argued with each other in newsprint, not online.

I had been searching online for the letter for years, but as I was putting together a scrapbook for my dad, I came across dozens of letters to the editor clippings. The cat letter, along with the responses it generated, was in the pile. I was ecstatic.

dad cat letter

The funniest thing is that I thought the letter my dad wrote was much longer and talked about how the stray cats would hang on the back fence of our patio and intimidate people taking out the garbage or going to the laundry room. Maybe Dad’s original letter was longer, and was edited for space. But reading it now, and admittedly a huge cat lover myself, it doesn’t sound as bad as I remembered.

You can zoom in with your browser if you want to read the details. Basically Dad says he doesn’t like cats, that they don’t do anything good for anyone, and that cats are lazy, sensitive and jealous. He also laments being late to work because of a cat curled up under his car. He finishes the rant by saying that cats are an abomination. “I just can’t stand the little devils.”

But the responses are great! Who knew there were so many crazy cat ladies (and I use that term endearingly as I am one) in the Los Angeles area in the 1980s? And the fact that it prompted one of the newspaper’s columnists to write his own editorial response is fantastic. His criticism that readers get more outraged over someone who doesn’t like cats but ignore the wars taking place around the world still applies today.

cat letter response_edited

 

The image of the mother cat and her kitten is included to show how my dad’s opinion on cats changed over the years. When he was working as a security guard at a trucking company, he met a stray cat that everyone called Bonita. The cat may not have been the most beautiful, but she touched my dad’s heart. When she became pregnant Dad made sure she had enough food to eat. Even after he no longer worked there, he’d stop by and leave her some canned food for her and the babies.

As Dad’s Alzheimer’s progressed, he would ask me how my cat “Missouri” was doing. (My cat’s name was Michigan.) So in the end, Dad turned out to like the “little devils” quite a bit.

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