One topic I’ve seen latelyin the world of dementia news is that hearing loss could be a symptom of dementia. There is growing evidence suggesting that hearing loss speeds up cognitive decline in the elderly. Doctors think there may be a mental and physical component. Physically, the brain has to direct extra resources to help with hearing problems and emotionally, people become more socially isolated as their hearing loss becomes more profound.
Dad did experience fairly significant hearing loss in the years before his dementia symptoms appeared. Mom suspected Dad was just using hearing loss as a way to tune her out, and I could see that as being a real possibility! But now I wonder if Dad’s hearing loss was the first sign of a much more serious health issue.
I think it would be a good idea if dementia screening became routine for elderly patients that complain of hearing loss. Many of the dementia screening tests are non-invasive, painless and quick to perform. Early diagnosis usually means more treatment options.
I read this USA Today article about how family caregivers of dementia patients are having a negative impact on the workforce. It is very true and yet another consequence of Alzheimer’s, one that is often overlooked. According to the article, 1 in 7 Americans have been or are currently caregivers for family members. Almost 70 percent of those people had to modify their work schedule in some way. This is a big loss of productivity for companies, if you want to look at it from a cold, hard statistical perspective.
Of course, as any caregiver knows, caregiving goes beyond just the physical tasks. Caregivers often become depressed, anxious and suffer from exhaustion. This can lead to accidents on the job or poor working relations with co-workers.
While I was not a direct caregiver to my dad, I was for my mom for the last half of 2012. My mom didn’t have dementia, she had cancer, but her need for a family caregiver was just as necessary. And I did the only thing I felt like I could do in that situation, which was quit my job. It was not a decision I made lightly, but my mom’s recovery depended upon having a family advocate by her side for several months. I’m an only child, and Dad passed the year before.
Right now, I’m back home but I’m still only working part-time. I’m hesitant to apply for full-time work again because I fear my mom may need me again. Financially, part-time income will not be sustainable in the long-term.
There are no easy answers, but caregivers and their ill loved ones need better community support. While there are some family members who want to be full-time caregivers, I think many caregivers benefit from keeping to as normal as a routine as possible. Caregivers shouldn’t have to choose between providing loving care for their loved ones and being able to support themselves and their families.
Well, here’s something about my parents that I never knew before. Mom and I were discussing the strange case of the Canadian tourist found dead at the Cecil Hotel and Mom mentioned that Dad was staying there when they dated. She said she would take the bus from her apartment to the Cecil Hotel to meet Dad. Then they would take another bus to the race track or wherever they were going on their date. They had to take a bus because Dad did not have a car. At the time, he did not even know hw to drive.
Dad was a handsome devil!
And it was Dad’s lack of wheels of all things that caused them to break up a few times. Mom came from that era and culture where you looked at a guy’s shiny set of wheels before you checked out the guy himself. Mom told me they got in a few tiffs that would cause them to take a break from each other for a few weeks at a time. Guess it’s a good thing that Dad got his best buddy to teach him how to drive.
But Mom admitted that she was the one that caved in and would call up Dad when they were on hiatus. Dad would ask why Mom was calling him and Mom would say to find out why Dad hadn’t called her. 🙂
Eventually, Dad obtained his license and a car and Mom’s heart. (Not necessarily in that order.)
UPDATE FEB. 2020: The documentary, “Crime Scene: The Vanishing at the Cecil Hotel,” premieres on Netflix on Feb. 10. I was interviewed for the project. Check out the trailer below.
UPDATE JUNE 2013: News sources are reporting that the death of Elisa Lam has been ruled accidental with bipolar disease being a “significant condition.” This ruling still does not answer the main question on most people’s minds, which is how Elisa Lam ended up on the roof of the hotel (a reportedly secure area only accessible to staff) and how she ended up in the water tank where it has been ruled she accidentally drowned. If no foul play was involved, was there negligence in security by the hotel? Did Elisa Lam have a mental health crisis? So far the police haven’t indicated that the hotel has done anything wrong. It appears we may never really know what caused Elisa Lam to end up on the roof where she tragically died.
My previous post about my father’s encounter with a ghost at the Cecil Hotel started receiving a lot of hits this past week. I soon realized there was a news report of a missing college student named Elisa Lam from Canada and her last known whereabouts were at the Cecil Hotel (also referred to as Hotel Cecil). Furthermore, there is video of her acting strangely in the elevator of the hotel.
A retro image of the Cecil Hotel. Photo: Crow’s Nest postcards, ebay.com
I hoped, along with everyone else, that there would be a happy ending to this story. But whether it is curse or merely coincidence, the Cecil Hotel is now the scene of another tragic death. Over the coming days, perhaps we will learn more about how Elisa Lam, 21, ended up dead in one of the hotel’s water tanks located on the roof. My condolences go out to her family and friends.
Right or wrong, the Cecil Hotel has earned quite the garish reputation over the years. The hotel has seen strange deaths over the years and served as a temporary home to serial killer Richard Ramirez. My father’s frightening experience in a room at the Cecil Hotel shook him up every time he retold the story. Of course, there have been thousands of uneventful stays at this hotel as well. I’m an open-minded skeptic when it comes to buildings with bad atmospheres.
I know Dad would have followed this case closely and would have been very saddened by the unfortunate outcome.
I’ve always been a big fan of film director Michael Haneke’s work. He makes films that are emotionally brutal and can make the viewer uncomfortable, because even in the darkest moments, we may catch a glimpse of ourselves in his films. Haneke’s movies are not everyone’s cup of tea, but for those who are involved with caregiving of an ill family member, “Amour” is essential viewing.
Copyright: Sony Pictures Classic
The movie has earned many awards and accolades, and is nominated for best film at the Oscars. Both of the lead actors are in their mid-80’s and offer amazing performances. The story is deceptively simple. A long-married couple faces upheaval when one of them becomes ill. For any of us who have been family caregivers, the roller coaster of emotions is displayed quite realistically in this film.
As the film progresses, the side effects of the wife’s illness begins to take greater hold over their lives, making both of them more desperate as they valiantly attempt to preserve their loving relationship. I won’t spoil the ending, but bring some tissues.
While the film is certainly a stark, sobering and heartbreaking look at family caregiving, there are some beautiful and tender moments of love displayed throughout the movie. I think anyone who has ever been a family caregiver will be able to relate to the new world that is formed when a loved one becomes ill.
I spoke this week to a representative of the Alzheimer’s Prevention Initiative. I’ve mentioned them before. They are one of many organizations waging battle against Alzheimer’s, with an emphasis on research. The Alzheimer’s Prevention Registry is focused on building up a database of willing participants for clinical trials they hope to begin in 2014.They hope to grow their database to 250,000 participants.
Why such a large number? As I learned the other day, it can be so difficult to fill a trial with people when such specific criteria is required. The bigger the pool of participants to choose from, the better chance these trials have of being filled with the best matches and seeing completion.
It is simple to sign up online. You are under no obligation whatsoever to participate in any trials or any of the organization’s activities. You will not be bombarded by emails, but you can receive updates on how current research is going in the area of prevention and treating Alzheimer’s. If you are willing to share your personal story, there is an option for that, which is why I was sharing my story with the representative the other day.
When we think of Alzheimer’s, most of think in terms of the impact on family. We think about family members being caregivers. But what about the friends of those with Alzheimer’s? Can simple human companionship still be relevant in the Alzheimer’s world?
I read this interesting and touching piece in the New York Times this week, about a group of women who have organized visits to a member of their circle of friends who has early-onset Alzheimer’s. These ladies gather on a regular basis for outings and chatting and noticed a difference in Sunny, who became unable to organize events for the group and had difficulty communicating. They talked to her family and when they found out the grim diagnosis, they did what good friends do: offered support.
So now the ladies arrange short, stress-free visits centered around themes their afflicted friend can still relate to. For now, these visits are happy and uplifting. The friends know that one day, these visits may not be possible any more, but they are focused on improving Sunny’s quality of life in the present. Her family is grateful for the break from caregiving and for the emotional boost it gives her.
Of course, not everyone has a circle of amazing friends like this, but they are telling their story in hopes of inspiring others. It’s not just family members that are impacted by an Alzheimer’s diagnosis. Everyone in that person’s life feels the pain yet can make a difference.
Hopefully, we can count on good friends like Sunny has, if we are faced with a dementia diagnosis.
ABC did a segment about a program called the Virtual Dementia Tour. Of course, we can never truly understand what each individual with Alzheimer’s experiences, but the simulation attempts to address some of the visual and auditory issues commonly experienced by Alzheimer’s patients. Subjects are fitted with goggles that impair their vision and headphones that play sounds often described by Alzheimer’s sufferers.
During the segment, the reporter and a man whose mother has Alzheimer’s undergo the experiment. Both struggle mightily with trying to complete the simplest of tasks. The eerie part was how much the man resembled his own mother in the confusion and disorientation he was exhibiting.
The unique experience is supposed to give the participant a better understanding and more empathy when they interact with people with Alzheimer’s. I think it is a valuable tool and is valuable to all dementia caregivers, whether they are professional or family caregivers.
Unfortunately, for our loved ones with dementia, they are trapped in this distorted world all of the time.
This blog pertains to advocacy in my state of Georgia, but the issue is similar in many places around the world. We must begin to build that Alzheimer’s roadmap now!
When we become aware that there is a problem looming, we typically assess the problem, think about the options, then put in place a plan to address that problem. Some of us are better at this than others.
Right now, thirty-four other states either have an Alzheimer’s State plan or have a study committee or task force currently working to develop a plan—much as our country has created a National Alzheimer’s Plan. Georgia, however, is not one of those states.
Yet, even after two attempts where the Georgia Senate passed resolutions to create a study committee or a task force, neither was appointed—due to budget constraints.
How else will we be ready when funds are available…don’t we need to assess what is already in place, what gaps exist, and therefore what our roadmap should be?
Don’t we need to build a strong collaborative effort between the Georgia State Government, voluntary…
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