Category Archives: Awareness & Activism

December 20, 2013 · 11:05 am

Two years since Dad died

It’s hard to believe that today marks the second anniversary of my father’s death. My grief is still pretty raw, yet the person I was back then seems like such a distant memory. So much has happened, both good and bad in the two years since his death that it almost seems like another lifetime.

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The weather is dreary, much like the day he died, though at least there’s not a cold rain. In fact, it’s unseasonably mild, making it ideal walking weather. So I took a long walk on my neighborhood’s walking trail, something Dad would have enjoyed. Then I stopped for coffee, another of Dad’s favorite things. I made a donation to the tribute fund for Dad through the Alzheimer’s Association. I’m dedicating the day to writing about Dad and promoting Alzheimer’s awareness. I’m listening to the Bing Crosby channel on Pandora while I write. They are playing so many of Dad’s favorite songs.

One of my favorite photos.

One of my favorite photos.

I’ve also started a Tumblr to vent about the rocky road of caregiving. Feel free to check it out, it’s called The Caregiver Vent. Warning, because it is a vent, it is uncensored so occasionally profanity is used. If you’re on Tumblr, let me know.

What I’ve learned over the last couple of years is that it is the effort we make in taking care of our loved ones that matters more than the results. Even the most skilled caregiver in the world cannot clear the confusion of a dementia patient. Those with dementia may not recognize their family caregivers. What it comes down to is you being able to live comfortably with the actions you take as a caregiver. You will make mistakes, we all do. Just try to avoid making poor decisions that will haunt you. And above all, be forgiving. Of others, and of yourself. I’m still working on that last one …

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December 1, 2013 · 12:40 pm

Wandering man with Alzheimer’s mistaken for intruder and killed

In my local newspaper there was a sad story about a man with Alzheimer’s who wandered away in the middle of the night and walked a few miles from his home. He ended up at the front door of someone’s house at around 4 a.m., where he proceeded to ring the doorbell multiple times and turned the doorknob. The residents, who had just moved into the home recently, were understandably freaked out and did the right thing by calling 911. But then the male in the house did exactly the wrong thing. He stepped outside with a gun and when he saw the approaching figure, who was now in the yard, he told the person to stop. The person did not obey his orders and kept coming towards him. The resident shot the man in the yard and killed him.

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Once the resident discovered that the intruder was actually an elderly man with advanced Alzheimer’s, he felt great remorse. Of course, the family of the man with Alzheimer’s also have to live with the violent and senseless way their loved one died. The police have not charged the man with gun yet, saying while it was foolish to go outside, he did not break any laws.

It’s a sad case all around but one that I unfortunately can see happening more in the future. It is easy for those who have never cared for a loved one with Alzheimer’s to criticize the family for allowing him to escape into the cold night, but we know how difficult it is to keep watch over someone with dementia 24/7. And those with Alzheimer’s may not be cooperative and act odd, even violent, scaring a stranger into taking drastic measures in order to protect themselves. Anti-gun advocates will want to blame weapons in the home, but it still goes back to the person and how they react in a situation.

I think about the several times my dad wandered off and how he could have ended up like this gentleman. It’s a sobering lesson for all of us.

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November 17, 2013 · 7:16 pm

Reduce antipsychotic drug use in dementia patients by using another drug?

The rampant and dangerous use of antipsychotic drugs to treat dementia symptoms in elderly patients has been in the spotlight recently due to Johnson & Johnson being hit with a $2 billion fine for the false marketing of Risperdal. Could the answer to this disturbing trend be yet another medication?

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A drug called Pimavaserin is undergoing a trial right now to examine its safety in treating Alzheimer’s disease psychosis. Currently there is no medication on the market that specifically treats this condition, and we’ve seen the consequences of the off-label use of other antipsychotic drugs. I saw what Risperdal did to my father and readers of this blog were vocal about their concerns in properly medicating those with dementia.

One would hope that a medication can be created to ease the mental and emotional suffering of dementia patients without turning them into walking zombies.

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November 11, 2013 · 3:56 pm

Risperdal lawsuit exposes ugly truths about elderly care

This past week, Johnson & Johnson was fined over $2 billion for false marketing and providing kickbacks to doctors and medical care providers regarding the off-label use of the drug Risperdal. I’ve written before how much my father’s mental and physical health declined after being prescribed Risperdal in the nursing home. Omnicare, which supplied my father’s medications, also paid a major fine of $98 million.

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.

Image credit: Schmidt & Clark, LLP

Image credit: Schmidt & Clark, LLP

Fines don’t bring back our loved ones who were harmed by this drug, but perhaps it will make pharmaceutical giants, doctors and nursing homes think twice before prescribing medications that can cause great harm to their patients. It’s difficult for caregivers to keep track of all of the medications being provided to a loved one when they are in a nursing home. I only discovered the extensive medication list for my dad when I examined the invoices that had been mailed to my mother from Omnicare. They wanted their money, over several thousand dollars worth racked up in less than a year, when in fact they were pushing a drug that was hazardous for elderly patients with dementia like my dad.

I’m not one for overzealous lawsuits and I’m not necessarily anti-corporate, but I’m glad that the whistleblowers exposed these companies for the malicious practices they were engaged in that impacted those with mental health issues who could not defend themselves. Better late than never when it comes to justice.

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October 30, 2013 · 3:53 pm

Lessons learned from an Alzheimer’s caregiver

This insightful essay was posted on Maria Shriver’s website earlier this month. It is written by a neurologist who became a caregiver for his father when he was diagnosed with Alzheimer’s. The piece outlines 10 lessons that the author learned as he helped guide his father on this journey that no one wishes to take. Most of the points are well-known to those who are Alzheimer’s caregivers, but the simplest and most obvious advice can easily get buried as you struggle to deal with the emotional impact of the disease. We all know that we need to stay positive, live in the moment, keep our sense of humor and stop sweating the small stuff. While all of that is easier said than done, the author does a good job of giving examples of how this sage advice helped his dad live the best quality of life possible, despite the grim diagnosis.

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The last lesson is perhaps the most important of all but one many of us may struggle with the most: put away resentment and regret.

What lessons have you learned from being an Alzheimer’s caregiver that you think are the most important to share with others?

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October 23, 2013 · 7:31 pm

“Tip of tongue” moments may be harmless

Good news for my mom and other seniors who have their fair share of “it’s on the tip of my tongue” moments. Apparently, the frustrating condition does not appear to be a symptom of dementia, according to the results of a recent study. The study involved over 700 subjects and while older people struggled more with these “tip of tongue” moments, the study concluded that there was no link between these temporary memory glitches and dementia.

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We all have those moments where we try our darndest to think of something but it remains just out our reach of memory. It’s frustrating, but as we get older, those moments sometimes are more frequent. My mom is an interesting case because she has always had this way of going off on several different tangents and forgetting what the original point was. It’s frustrating for her, and for me. 🙂

But Mom worries every time she struggles to remember something that she is exhibiting the early signs of dementia. After losing Dad and a sister to Alzheimer’s, it’s an understandable fear. As I march towards 40, early-onset Alzheimer’s is on my mind.

It’s a relief to know that these slips of memory are not something that we should worry about too much. We have enough to worry about as it is!

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October 12, 2013 · 11:40 am

ICU stays can trigger dementia

The Intensive Care Unit offers the best of care for critically ill patients. It is necessary in certain cases and the quality of care and technology available in the ICU has saved countless numbers of lives. But a recent study discovered that extended stays in the ICU can trigger dementia symptoms.

A new study suggests that staying in the ICU too long can trigger dementia symptoms.

Shorter ICU stays may help reduce the risk of dementia symptoms.

The Vanderbilt University study followed 800 patients after their ICU stay for a year. A whopping 75 percent exhibited signs of dementia during the study period. 1 in 3 exhibited symptoms of Alzheimer’s disease. The age of patients did not impact the display of symptoms. One example given in the article was a 46-year-old woman who spent three weeks in the ICU was still dealing with cognitive impairment issues 18 months later.

The study concluded that both serious illness and anesthesia drugs used during surgery could be dementia triggers.

My mother, who does not have dementia, had two surgeries last year that landed her in ICU. Her first surgery was of emergency nature and landed her for several days in the ICU. The second surgery was scheduled and Mom spent only the minimum amount of time in the ICU that is required post-surgery. Mom also had multiple complications (blood clots) with the first surgery. Her mental state was impaired for months after the first surgery but she was alert and talking just about an hour after the second surgery was completed. Her mental recovery from the second surgery was very quick.

When my dad had to have surgery to remove a kidney stone, he was in the middle stages of Alzheimer’s. His recovery was very slow and I do believe his cognitive functioning declined more rapidly than it had been before the surgery.

We can’t always avoid stays in the ICU, but advocates suggest asking for lighter sedation options when possible and trying to get patients engaged in mentally stimulating activities while they are recovering.

What has been you or your family member’s experience been like in the ICU?

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October 1, 2013 · 1:01 pm

Can stress cause dementia?

If this latest dementia study from Sweden is true, I’m in big trouble.

Maybe we all need to have a good scream or shout.

Maybe we all need to have a good scream or shout.

The study kept track of 800 women from their late 30’s through their senior years. Stressful events that occurred to the subjects were recorded over those years. Between 1968 and 2006, almost 20 percent of the women developed dementia. An association between the number of stressors reported by the subjects and an increased risk of dementia (15 percent) and Alzheimer’s (21 percent) was reported. While further studies will need to be conducted to establish a link, it is believed the damage that stress can inflict upon the body, including inflammation of the brain, may be the culprit.

The Huffington Post article also points out that stress hormones can remain elevated long after a traumatic event.

Considering my last couple of years, this is an alarming finding. Dare I say it is … stressing me out? 🙂

But on a serious note, those of us who are family caregivers cannot deny the physical and mental consequences of stress. I have no easy answers on how to relieve stress. I’ve tried many of the recommended methods and failed. If you have a stress-relieving activity that you enjoy, try to work that into your normal routine. Letting off steam and returning to a calm state should be considered as necessary as breathing and any other vital body function.

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September 25, 2013 · 5:51 pm

Hospital visits for dementia patients often tied to insurance type

There is much talk here in the U.S. as the new health care exchanges that the Obama administration has developed to lower health insurance costs open on October 1st. But I found an article this week that has some surprising results in another part of the health insurance world that impacts dementia patients.

Presbyterian Hospital, the last place I saw Dad alive.

Presbyterian Hospital, the last place I saw Dad alive.

A study conducted by NYU researchers found that dementia patients with managed care insurance were sent to the hospital less often to treat end-of-life health issues that would not improve their quality of life. Managed care organizations receive a lump sum payment for each patient, so they have an incentive to keep costs low by not encouraging unnecessary medical care. However, those with traditional Medicare which pays a fee for each service rendered were sent to the hospital more often. The difference in hospitalizations by insurance type was significant: only 4 percent for those with managed care vs. 16 percent for those with Medicare.

Managed care incentives to keep costs low can backfire on patients, sometimes limiting coverage of services that are not medically necessary but would improve quality of life. But in this instance, the focus on the financial aspect of healthcare actually benefits advanced stage dementia patients. My father was in and out of hospitals the last year of his life because his inpatient stays were completely covered by Medicare. But they did not improve his quality of life; in fact the sudden change of environment may have left him more mentally confused. The elderly are also at high risk for serious, even deadly hospital-acquired infections every time they spend time in an inpatient facility.

It’s one of those rare examples where shrewd and calculating financial decisions actually translates to compassionate action.

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September 17, 2013 · 10:29 pm

Antipsychotic medications on the decline in nursing homes

Data released by the Centers for Medicare & Medicaid Services found that antipsychotic drug use in nursing homes has declined 9.1 percent for the first quarter of 2013. In 2010, over 17 percent of nursing home patients had daily doses exceeding recommended levels. The CMS launched the National Partnership to Improve Dementia Care last year and hopes to reduce antipsychotic drug usage by 15 percent by the end of 2013.

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The overuse of antipsychotic drugs in nursing homes, especially to sedate dementia patients is an issue that strikes home for me. I watched my father suffer the consequences of being kept in a zombie state on these drugs. While I can’t know if my dad suffered while on these medications, my mother certainly did as she visited my father in this drugged state on a regular basis. My father only showed minimal aggression which probably could have been treated with behavorial therapy or milder drugs with less side effects. The main reason he was so heavily drugged was because like many dementia patients, he wandered.

I do feel for the understaffed, overworked and underpaid nursing home staff, who have no doubt found it easier to give patients a pill to keep them from becoming another problem to deal with. There is no easy solution, but filling helpless people full of drugs is not the answer.

Let’s hope the CMS initiative continues to be successful.

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