Category Archives: Awareness & Activism

August 31, 2014 · 5:07 pm

Throwing pills at a mystery problem

I know many of you have dealt with similar problems when it comes to the mystery ailments our loved ones have. The journey to the diagnosis is riddled with potholes.

So despite having several different tests which showed nothing wrong, my mom continues to experience pain in her back and abdominal region. The pain became worse over the past week, so back to the doctor she went.

pills

It was a relief doctor because Mom’s primary care physician was attending to a family emergency. Mom had to wait over three hours to see the doctor.

Without going into too many details, Mom’s bowel habits have been irregular, so the doctor prescribed a stool softener for her. Fine. I’m hoping that Mom is just constipated and we can get her on some fiber supplements and probiotics to keep her regular.

She also ordered x-rays of the abdomen and back. I don’t think they did the back during her recent radiology visit, but she just had the abdominal scan done a month ago, presenting the same pain complaint. Of course I want to know what is causing Mom’s health issue, but it seems like it would be in the best interest to keep the radiation exposure of a cancer patient to a minimum.

A urine sample was also taken. Mom said some of the urine spilled on her hand as she was collecting the sample. The doctor said there was some bacteria present, and sent it to the lab for further processing. In the meantime, the doctor prescribed her antibiotics.

I despise this knee-jerk reaction most doctors have when it comes to antibiotics. Chances are, the bacteria was from the contaminated sample. (Mom told the staff about the mishap.) I’m not trying to minimize the serious health risk of infections in elderly people, but antibiotics also come with their own side effects. And certainly, antibiotics can cause stomach upset, which is the last thing Mom needs.

That’s my point. Doctors prescribe antibiotics like they are aspirin, “just in case” there is an infection present. I’m all for preventative medicine, but let’s face it, antibiotics are used as a timesaver. They make the patient feel like they are doing something for their health issue, and it saves the doctor from having to spend time further investigating symptoms. It’s not just doctors that are to blame; patients have now been trained to demand antibiotics as the standard of care for a variety of ailments.

Antibiotics are wonderful, life-saving medications. But as the CDC has stated, doctors overprescribing antibiotics is creating a health crisis of its own.

The real head scratcher is that the doctor prescribed my mom a new pain pill. Mom is already on pain medications. Constipation is a common side effect of prolonged pain medicine use.

So Mom goes home with a bag full of pill bottles, but we are no closer to figuring out what is causing her mystery pain. Frustrating.

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August 26, 2014 · 8:00 am

‘Alive Inside’ and the power of music

I was able to go see the documentary, “Alive Inside” this weekend and it definitely met and exceeded my expectations.

As many of you probably know, the inspiring project at the center of the film is best known by a clip posted on YouTube of an elderly African-American man named Henry, who is in the latter stages of Alzheimer’s. He lives in a nursing home and his caregivers say he is barely verbal, usually keeping his head down all day long. Then they put the headphones on, and play the beloved music of his youth. Like a switch, Henry becomes alive, and most surprisingly, quite verbal and coherent. The effect is truly amazing. The video has gone viral, receiving millions of page views.

alive inside-poster

Dan Cohen, through his Music & Memory program, has a mission: he wants to bring personalized music to every nursing home resident in America. It sounds like a simple, clear-cut mission, but it turns out to be quite a challenge. Bottom line, there’s more profit to be made in the creation and marketing of ineffective medications than there is in Cohen’s proven grassroots program.

The benefits of music to those with dementia and other mental illnesses is astounding. Music has a greater impact on us than just making us tap our toes and fingers. Music touches the deepest parts of our emotional core, that usually remain intact even into the latter stages of Alzheimer’s.

Music has been part of my life for as long as I can remember. My dad would sing to me as a baby, I had a collection of Disney records as a little girl, and then I went on to develop my own eclectic taste in music as a teen and adult. Music can move me to tears or pump me up with energy. I can’t imagine life without music.

I wish I had understood the power of music better while my father was still alive, because I’m sure he would have loved to have heard Bing Crosby and Frank Sinatra.

Another point the documentary makes is how lonely and dehumanizing institutional life is for the residents. While music is not a substitute for human companionship, it can help fill a void.

“Alive Inside” is getting great reviews and I hope the buzz around the film will translate into donors who will help Cohen reach his worthy goal. If you have an iPod collecting dust, please consider donating it to this program.

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August 23, 2014 · 10:00 pm

Dealing with dementia in an intimate relationship

Many of the people I follow on WordPress are dealing with a parent or grandparent with dementia. A few are dealing with a spouse, and with this, comes an entirely different and complex set of issues.

I finally got around to reading the memoir, “Jan’s Story,” by CBS correspondent Barry Petersen. The book has generated some controversy. Petersen’s wife, Jan, was diagnosed with early-onset Alzheimer’s at the age of 55. Petersen’s account of how Alzheimer’s impacted their relationship is frank and heartbreaking. After arranging for her care at home for several years, he finally places her in a residential facility as the disease progresses. Eventually, at the point where his wife barely remembers who he is, he begins a tentative new relationship with another woman.

jans-story-cvr

It’s the latter details that many find distasteful. Some of the couple’s friends turn against him, and some readers of his memoir feel he is selfish in his actions.

I certainly do not feel I am in the position to judge other caregivers, as there are many things I would do differently in dealing with my father’s dementia. I think hearing the male perspective is important when it comes to being a caregiver of a spouse with dementia. The breakdown of intimate relations is a side effect of dementia that many would rather not discuss. For Petersen, the loss of intimacy with his beloved partner is devastating. The transformation from lover to parent is traumatic. The difficult decision he makes are agonizing for him and I don’t believe were made on a whim.

The book brings up a host of interesting questions. Especially with early-onset Alzheimer’s, should the caregiver be left in relationship limbo when it may take a decade or more for the disease to finally cause physical death? As long as one provides good care for their spouse, is it acceptable to find affection outside of their relationship?

For some, “until death do you part” means just that, no exceptions. I respect that. But dementia has a way of turning the normal way of doing things upside down.

For those wondering, Jan died in 2013, a few years after the memoir was published.

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August 16, 2014 · 11:53 pm

Showing appreciation for the dementia caregiver community

A big thank you to Neighbor Nancy and Ann Ahnemouse for nominating me for a Very Inspiring Blogger Award. Nancy I have had previous contact with but I don’t believe I have with Ann, so it was a pleasant surprise to hear she had been following my blog for quite some time. It is yet another reminder of the wonderful community of caregivers waiting to be found in the blogosphere.

The rules are simple:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
Proudly display the award logo on your blog and follow the blogger who nominated you.

7 facts about me:
– I have Celiac Disease, and have been on a gluten-free diet since 2005.
– I’m a cat lover.
– I like my coffee black, no sugar.
– I’m a bourbon aficionado.
– I was born and raised in California, but have no interest in returning.
– A big Greek salad is one of my favorite meals.
– Stephen King is one of my favorite authors.

Bloggers you should follow (For sake of time, I have less than 15 but will try to add more soon!)

My Neighbor Miss D Nancy is a devoted elder advocate, and has been the driving force in helping a neighbor in her building who has dementia return to her home after she suffered abuse from family members.
Ann Ahnemouse As I said, this is a new blog for me, but she’s been posting for a few years! Ann writes about her journey with her partner, and how his dementia impacts their lives.
terry1954 I’ve been following Terry’s blog for quite a while. Terry was the sole family caregiver of her brother, who had MSA. He died this year, and while the end of his suffering was indeed a blessing, there is a giant hole left behind when our loved ones depart, no matter the circumstances. Terry is a fearless writer who shares her thoughts on many topics.
Alzheimer’s Speaks: Lori La Bey is a tireless advocate for caregivers. She has a radio show as well!
SaveEveryStep: You should subscribe to this blog for the weekly “Joe’s Letter” post alone. The letters are from the blogger’s uncle from WWII and they are so fascinating! If you love nostalgia, you’ll love her blog, as she often writes about the fashions and music from her childhood and adolescence. But Helen Spencer founded the website, SaveEveryStep.com in memory of her mother. She is giving back to the world by allowing you to capture your own family’s memories and preserve them for free, a useful service to anyone, but especially for families touched by Alzheimer’s and dementia.
Hot Dogs and Marmalade: This blogger’s mother has Alzheimer’s and she writes both poignant and humorous accounts of her family’s life. You’ll have to read her blog to find out the reason for the unusual title of her blog!
My Demented Mom: Kathy Ritchie doesn’t sugarcoat one bit of her experiences caring for her mom, who has frontotemporal dementia. Kathy is in her 30s and is now a mother herself. Her blog is breathtaking in both its agony and in the way she expresses her love and dedication to her mother.
Quilt of Missing Memories: Talk about a family devastated by dementia. Jacquelyn’s father, mother and husband all have a form of dementia. Her father has passed, and late last year, so did Jacquelyn’s husband. I appreciate this blog because of the simple and joyous photos and short poems that are posted on a regular basis.
Lori’s Lane While not a caregiving blog in particular, the blogger did find herself in that role when her husband suffered a serious accident on the job. I love this blog for the insightful posts and the uplifting quote every Friday.

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August 5, 2014 · 10:49 pm

Is unexplained weight loss an early symptom of Alzheimer’s?

I came across an interesting article about a piece of Alzheimer’s research I had not heard about before. Apparently, researchers at Weill Cornell’s Feil Family Brain and Mind Research Institute found a possible connection between the buildup of amyloid-beta peptides and weight loss. The peptides create the notorious plaques in the brain that is commonly associated with Alzheimer’s disease. The otherwise unexplained weight loss often occurred several years before symptoms of cognitive decline were diagnosed.

scale

According to the researchers, the amyloid-beta peptides interfere with the body’s ability to regulate its weight. If the research proves to be accurate, it is yet another cruel and devastating way Alzheimer’s destroys the body.

My dad was always on the lean side so it’s difficult to say if he suffered from weight loss early on in the disease. By the mid to late stages, my father was certainly wasting away, but up until the last couple of months of his life, he had a voracious appetite.

The more we learn about Alzheimer’s, the more we understand that this disease can manifest itself in ways we never imagined before. Alzheimer’s is not just about losing your memory; the disease attacks the brain in ways that can impact everything from swallowing to weight control.

Did you notice otherwise unexplained weight loss in your loved one before they were diagnosed with Alzheimer’s disease?

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July 27, 2014 · 6:26 pm

Dodging the health crisis bullet … for now

Recently, I wrote about my mom experiencing a mysterious pain in the same general area of her colostomy surgery. She had a few other vague symptoms that warranted further testing. The oncologist ordered CT scans of the abdominal area and the chest.

Unfortunately I had to get back to work so Mom had to manage the scan prep on her own. Even though Mom certainly has her eccentric ways, it is such a blessing knowing that she is still fully capable of handling things outside of her routine, such as going for medical tests. Yes, it was stressful for her, but at 77, she managed quite well.

mom-77-bday

The tests were done right before my birthday, with the results coming back the next week. I admit I spent a pretty good chunk of my birthday weekend mulling “worst case scenarios.” The colon cancer was back. The cancer had spread to another region. What would I do this time? I cannot afford to quit my job again. How would I afford Mom’s care.

Mom had a followup appointment with the oncologist on Wednesday afternoon. I was both eager to hear the results and dreading them at the same time. Finally, Mom calls. For once, she didn’t beat around the bush. (If it had been bad news I had a feeling she would have delayed the announcement.)

All of the tests came back normal. No cancer was detected. Mom was given a clean bill of health. Now of course that doesn’t solve the mystery of Mom’s pain (she insists on calling it a “discomfort.”) But the pain has not increased in intensity so far and it doesn’t stop her from going about her life.

So a sigh of relief, for now. As caregivers we are always ready for the next health crisis. But we also learn to appreciate those good days a bit more.

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June 20, 2014 · 12:32 pm

Free Alzheimer’s books in honor of The Longest Day

UPDATE: Thank you to all who requested a book. Your copy will be mailed soon. And a big thanks to all of you who participated in The Longest Day.

Today the Alzheimer’s Association sponsors The Longest Day, where from sunrise to sunset everyone is encouraged to participate in Alzheimer’s awareness activism.

Chicken Soup For the Soul: Living With Alzheimer's and Other Dementias

My way of participating this year is to offer a free copy of “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” to anyone who is interested. I have a limited supply, but I can fulfill several requests. They will be handled on a first come, first serve basis. If you would like me to send to a friend, relative, organization, etc. I am happy to do that as well. I just want these inspirational and moving stories to find a good home where they will be appreciated by others who are on a similar journey.

Rest assured I will never share any contact information with anyone else.

I will cover all shipping costs. Simply email me at joyjohnston.writer@gmail.com or leave the mailing info in the comment section below. I will update this post when I have received the maximum number of requests that I can fulfill.

What are you doing for The Longest Day?

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June 9, 2014 · 8:00 pm

Let’s talk about guns and dementia

Here’s an important topic for family members to discuss: gun ownership and seniors, especially those who have been diagnosed with dementia. While there is quite a bit of awareness of the need to take the car keys away from those with dementia when their driving skills become impaired, there is little discussion about another deadly weapon found in many households. As part of the “caring for our aging parents” #Blog4Care blog carnival, please spread awareness about this topic so that families can have discussions about the proper precautions needed in their homes. Perhaps we can help prevent injuries and save lives.

If you’ve been following the news in America recently, there has been a slew of tragic shootings that have once again ignited the gun debate. The issues surrounding gun ownership and gun violence are being passionately debated right now. But one angle of this issue I never thought about before involves seniors and guns.

gun

An intriguing post on Alzheimer’s and Dementia Weekly made the point that more seniors own guns than any other age group. With the increased risk of dementia as one ages, this could create a dangerous situation. The article quotes Dr. Ellen Pinholt, who wrote in the Journal of the American Geriatrics Society that as family members, we should think about seniors and guns the same we do about seniors and driving. While there is no maximum age limit for owning a gun or driving, mental health status should be taken into consideration for both situations.

Dr. Pinholt recommends asking “the 5 L’s” when it comes to gun ownership and seniors. The questions include if the gun is locked, if it is loaded, if there are children present where the gun is located, whether the senior is depressed, and whether the senior has been diagnosed with dementia.

Sounds like simple and sane advice for an issue that is so complex and controversial. Still, I think it is just as important to consider the issue of having a gun in the house as it is allowing a person to drive once they’ve been diagnosed with dementia. It is yet another question to add to the all-important discussion with your elderly parents and the rest of your family.

While stereotypically, these random mass shootings tend to be perpetuated by young men, anyone who has a condition that impairs the brain and impacts judgement and emotions should probably have their access to a gun restricted, to protect themselves and others. I’m not a fan of legislative restrictions on personal liberties, but when someone’s safety and society’s safety is at risk, smart and limited restrictions may be appropriate.

While there is not a good substitute to driving a car, seniors with dementia may be able to handle a replica gun that either shoots a safe-type pellet or even better, a replica gun without ammunition. Of course, immediate supervision would be necessary. As caregivers, we should try to allow our loved ones with dementia to enjoy their hobbies as long as possible, if safety measures can be taken.

What do you think about the issue of gun ownership and seniors, especially those with dementia? Should guns be immediately removed from the household upon a diagnosis of dementia or are there alternative and less drastic solutions to consider?

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June 1, 2014 · 3:56 pm

How should we deal with the unfiltered versions of our loved ones?

I wrote previously about the rumors that the least favorite man in professional sports, Clippers owner Donald Sterling, had Alzheimer’s. It appears that those rumors have been confirmed. USA Today reports that Sterling exhibited symptoms consistent with Alzheimer’s disease after undergoing an extensive neurological examination.

man speaking outline

On the one hand, this development places Alzheimer’s disease in the national spotlight, where it belongs. Unfortunately, because the disease is now associated with a man that so many find morally reprehensible, there is bound to be some backlash.

As I followed the news on Twitter, I found many people who found the Alzheimer’s diagnosis all too convenient, a way to look for sympathy from a public that was left aghast by his vehemently racist remarks that were secretly recorded by his much younger girlfriend. Others simply equated Alzheimer’s with crazy, saying “duh” of course Sterling is a crazy old man.

I hope in the days and weeks to come, as this dirty sports saga plays out in the American media, we can have an honest conversation about Alzheimer’s and behavior. This case raises many interesting questions for me. First of all, I think many of have experienced how those with Alzheimer’s lose their conversational filters, saying whatever comes to mind, whether it is offensive or just strange. Some begin to use profanity when they never did before. Generally I think those of us in the Alzheimer’s and dementia communities understand that this is the disease talking, and those afflicted should not be held responsible for their harsh words. For physically abusive actions, we can try behavior modification techniques and medications.

But the Sterling case is a bit different. There are numerous reports that Sterling had been a virulent racist his entire life, despite winning awards from the NAACP. Has the disease just erased his filter? Should the Sterling family be forced to sell the team for what a mentally ill man said, when he was allowed to be an NBA owner all of this time, even with his racist views?

I’m not raising these questions to defend Sterling; certainly he is a very wealthy man who can afford the best of lawyers and doctors to serve his best interest. But it is interesting to debate how much we should hold those with Alzheimer’s and dementia accountable for their words and actions.

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May 28, 2014 · 12:07 pm

Want a free copy of a new Alzheimer’s book?

It has been just over a month since “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” was released. So far, the demand has been overwhelming, the reviews extremely positive, and a second printing has been ordered!

Chicken Soup For the Soul: Living With Alzheimer's and Other Dementias

Since I was fortunate enough to be selected as a contributor, I have a few extra copies available. Starting today at noon ET, through Friday noon ET, you can enter a raffle for a chance to receive a complimentary copy of “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias.”

Note: You must click on the Rafflecopter link below to be registered for the contest. Rafflecopter is a popular, safe contest platform. You can login through Facebook or with an email address. Follow the prompts on the form to enter the raffle.

Enter the book giveaway

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