Important advice to remember. It’s so easy to lose yourself while caregiving for others.
Caregivers bear the brunt of a lot, which is why, in the process of caring for our loved ones, we need to take care of ourselves, too.
Or so I tell myself every single day.
Filed under Memories
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.
Filed under Awareness & Activism
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.
Filed under Awareness & Activism
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.
Filed under Awareness & Activism
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.
Filed under Awareness & Activism
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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Filed under Memories
Pauline Phillips, aka Abigail van Buren, was better known as “Dear Abby” by her vast news advice column readership. She dispensed friendly but firm advice to thousands of questions on a variety of daily life topics over the years. She also was not afraid to give her opinion on hot-button topics like women’s rights, AIDS and gay rights. But for those of us touched by Alzheimer’s, her early advocacy helped this terrible disease get the public attention it deserves.
The sad and twisted irony is that Ms. Phillips would end up succumbing to Alzheimer’s disease herself. She lived for a decade with the disease, before passing away at age 94 in January 2013.
The Alzheimer’s Association has posted a lovely tribute that explains how her role as Dear Abby helped the public understand more about Alzheimer’s disease. While it can be easy to scoff or be dismissive of the power of pop culture figures and advice gurus, their messages can be powerful.
Filed under Awareness & Activism
Today, in addition to the presidential inauguration and the federal Martin Luther King Jr. holiday, is designated as a day of service. In the spirit of MLK, everyone is encouraged to go out into their communities and help those in need.
Participating in events like this can be difficult if you are a full-time family caregiver. Certainly when you are caring for someone with dementia, they cannot be left alone for even a minute. And while those in the early stages of Alzheimer’s might be comfortable attending a day of service event, others might feel overwhelmed. Financially, things may be difficult as well, so financial donations may be out of the question.
My feeling is that as caregivers, we are providing a day of service EVERY day. So don’t feel guilty if you can’t actively participate today.
There are volunteer opportunities with the major dementia organizations. There are many more volunteer opportunities on a local level. Do what you can. Promote the needs of the Alzheimer’s and dementia communities as best as you can.
The most important thing is to have a voice for those who can no longer express themselves.
Filed under Awareness & Activism
I wish I had known that patient navigators existed when my father began his journey into the world of hospitals and nursing homes. I think it would have been worth the fee to have someone who had the knowledge and the experience in handling hospitals, nursing homes and billing issues.
With my mom, I felt I had better control over the situation. The hospital’s discharge planner gave me literature on the skilled nursing options in the area, and encouraged me to visit each of them before choosing one. I did and picked the facility with the best rehab services, because that was Mom’s most pressing need at the moment, her need to learn how to walk again. While the facility I chose did come with its own host of issues (that are pretty common in these places, unfortunately), the rehab was excellent and Mom left the facility fully walking on her own.
But with Dad, it seemed like his healthcare decisions were made by strangers. It didn’t help that often he was far from home when these decisions had to be made. Often, Mom and I felt like it was easier to go along with whatever the hospital recommended, because we were not familiar with the city Dad was in and the care options back at home were not sufficient for his needs. But it was when Dad first entered the nursing home world that we seemed the most helpless. I received a call just before Christmas 2010 with Mom telling me that Dad had been moved to Roswell. I assumed she meant to a hospital there because he was sick again, but no, it was an assisted living facility with a dementia wing.
I don’t know the details but Mom swears they moved Dad from the temporary rehab center he was in without her permission. I’ve asked people in hospital administration and they claim that is impossible, that payment and paperwork would have to be conducted up front. I believe this is probably the case, but see how a patient navigator could have been of great use to my mom in this situation?
She would not have been as overwhelmed and the patient navigator could have clearly explained what our options were. This is still just a small industry so I’m sure these services are not available in all areas but it is good to keep in mind if you are a caregiver facing major medical decisions regarding your loved one.
Filed under Awareness & Activism
For any caregiver or family member who have had to place a loved one with Alzheimer’s in a long-term care facility, the fact that this kind of care costs a lot of money comes as no surprise. But I’m not sure if the general public understands just how much out-of-pocket expenses there are, and how quickly your family’s savings can drain away to provide the needed care.
This Met Life survey sums up the 2012 average costs for nursing homes, assisted living facilities, adult day services and home care costs. The numbers are brutal. For Alzheimer’s patients in the early to middle stages of the disease, an assisted living facility might be appropriate. The average annual cost was $42,600. As the disease progresses, often a skilled nursing facility will become necessary. The average annual nursing home cost was $81,030 for a semi-private room. For Alzheimer’s patients who may be combative with other patients, a private room cost $90,520 annually. (These costs are for the U.S.)
So a family with a loved one who needs long-term residential care may need to foot a bill that comes to almost $100,000 for a year’s worth of care. I don’t believe the above rates include medications, which are billed separately (at least in my dad’s case, they were.) I had an aunt on my mom’s side who just passed away this past week. She had Alzheimer’s and had been in a nursing home for several years. The monthly cost was over $7,000 and this was a facility in a tiny, rural Southern town, not a fancy big city place.
I wonder how many people mistakenly believe that Medicare covers these costs. Sadly, I think it’s probably a pretty high number. Medicare is pretty good about covering the high cost of hospital care and surgical procedures that often become necessary as one grows older. But the lack of provisions for dementia residential care, in particular, is a heartbreaker and financially devastating for so many families.
Filed under Awareness & Activism
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