I haven’t had a chance to watch the PBS Frontline special called, “Life and Death in Assisted Living” yet, but I did read the online report. My interest was certainly piqued when I discovered that Emeritus was the assisted living company being investigated. My father spent the last year of his life in an Emeritus facility. I’ve written many posts about the good and bad experiences there. The PBS report takes a long and hard look about how Emeritus seems to be more interested in raking in cash that taking good care of patients. The accusations made range from hard-selling (fill those beds!) to employing woefully unqualified people to take care of dementia patients and not filing incident reports as required by law. To be fair, I would think that most of the corporations running senior residential facilities have aggressive financial goals, so Emeritus is probably not any better or worse than most of the other companies.
Are assisted living companies putting greed over good care?
I know that if my mom had understood Dad was going to be an hour-and-a-half away from her, she would not have agreed to move him to the Emeritus property but somehow, that seemed to happen overnight. Mom said it was without her permission, but having asked around and now seeing how profit-focused Emeritus seems to be, I think it was just a hard sell tactic and Mom ended up signing a paper that allowed Dad to be moved. The rate increased multiple times in the 10 months he was there. I remember talking to the admissions coordinator when we were just checking out facilities and she told me that Dad’s monthly checks should cover “most” of the costs. Not even close. By the end, we were paying over $4000 a month and Mom had just received a notice that another big rate hike was coming right before she transferred him closer to home.
That rate didn’t include any medications, which racked up a bill totaling several thousands of dollars that we just finished paying off earlier this year. I did report the facility to a state board because I felt they overmedicated my father and gave him medications that were under scrutiny for being dangerous to give to elderly patients. I never heard any followup from my complaint.
The PBS report also talks about the numerous patient falls due to staff not adequately supervising patients. My father fell several times while at the Emeritus facility. The staff called us each time there was an incident (that we know of) and took him to the hospital when necessary. Even with adequate staff, preventing a fall can be difficult with dementia patients. I feel that the Emeritus facility that my dad was at followed the rules in this area, though I did wonder if there was a better solution than placing my dad’s mattress on the floor after he fell out of bed multiple times.
I’ve read both good experiences and horror stories when it comes to senior residential facilities from the amazing bloggers I follow. If you have the chance to catch the PBS special, let me know what you think. Can corporate entities balance making a decent profit with providing excellent care for our most vulnerable citizens?
On Monday, I was lucky enough to get a chance to attend a free reading of the play, “Absence” by Peter M. Floyd. It was presented at the Alliance Theatre, one of Atlanta’s most respected theatre companies. Before the reading, there was a senior care resource center where local companies were on hand to talk about their products.
The play itself is quite simple, yet powerful. A strong, vibrant woman develops dementia and the play illustrates the impact her diagnosis has on her and her family. Anyone who knows someone with dementia will be able to relate to the themes of the play: denial, anger, frustration, sadness, desperation.
There are a some moments of humor sprinkled throughout but overall the play is a sobering reminder of the impact dementia has on family relationships. I was intrigued by the personification of the disease in the form of a wise-cracking doctor with a northern accent. Throughout the play, he acts like a drug pusher trying to peddle heroin on an unsuspecting youngster, telling the lead character that Alzheimer’s wipes the slate clean, along with all of your regrets and mistakes, making you feel free. It’s an interesting perspective.
The lead character and her daughter reminded me of my own relationship with my mom. I would love to see the play fully produced, as I was really blown away by the reading alone.
If you get the chance to see this play, don’t hesitate but be prepared for it to hit close to home.
For those of us who have lost a father due to Alzheimer’s complications or who are watching their dad battle the disease right now, Father’s Day is a holiday with mixed emotions. But while the damage Alzheimer’s inflicts on families should never be forgotten, this is also a good day to reflect on the positives of your relationship with your dad. After all, you might not be feeling such pain or loss if you did not value him and love him deeply as a father to begin with. For some people being estranged from their father makes this holiday a very painful experience as well.
For me, the realization that I did deeply love my dad and didn’t have this distant, indifferent relationship I always imagined came after Dad began losing his mind. That is unfortunate, but I know right before he started to change, I was able to tell him how I know it was difficult dealing with Mom sometimes and to just try to hang in there. In fact, one of the last things I remember him saying to me on my last visit before he became ill was, “Your mother is driving me crazy!”
I can still hear his hoarse, smoker’s voice making that half-joking, half-serious accusation. (My parents drove each other a little crazy, but they were devoted to one another.)
I could beat myself up today for not being there more often for my dad when he began the sad, slow slide into dementia. But at least I did get to hold his hand and tell him how much I loved him in the last couple of months of his life. And he was even aware and able to respond at one point: “I know you do.”
Actions of the past can’t be changed so as caregivers and family members we should stop being so hard on ourselves. Take today to remind yourself of the more pleasant times and let them bring joy to you even now as you mourn or suffer.
I read about an interesting study today that found those in the early stages of Alzheimer’s may try to mimic the emotions of those around them. The results suggest that it is in the best interest of caregivers and family members to try to maintain a calm and positive demeanor in the presence of those with dementia. I know, easier said than done, right! Still, it is interesting to wonder if the emotional disturbances and changes are a result of Alzheimer’s patients becoming more sensitive to the emotions of those around them. And anyone who has dealt with someone with Alzheimer’s knows that there is a great deal of anxiety, frustration and sadness, especially early on before proper coping mechanisms are developed. The condition has a name: emotional contagion.
A new study finds that dementia patients may mirror the emotions of those around them.
I’m not sure I witnessed my dad mimic other’s behavior but I did notice his excessive attempts at “fitting in” or being part of a conversation or situation. He would try to make a relevant comment but I could tell by his eyes that he had no clue what Mom and I were discussing. As I’ve mentioned in previous posts, this stage of the disease is actually more heartbreaking to me than later on, when many patients “disappear” emotionally. Once Dad entered the nursing home, he was heavily medicated as most dementia patients are, which tends to turn one into a zombie. I struggled more with Dad trying to be upbeat and tell jokes even while he was clearly losing his mind than the sullen, withdrawn shell of a person he became in the nursing home.
Whether the person with dementia mirrors the emotions of others are not, it of course is best for everyone if a calm and stable atmosphere is maintained. That’s not to say you should beat yourself up if you show exasperation in front of your loved one with dementia. It happens, we’re human. But even while dementia strips away abilities and memories, it may magnify sensitivity in other areas that before we have ignored.
I’ve been contemplating grief, both mine and others lately. This was even before the tragic events at the Boston Marathon. I’ve watched documentaries covering the topics of the dying and the grieving process for those left behind. I watched “Griefwalker” featuring Stephen Jenkinson, a fascinating man who has dedicated part of his life to helping spiritually care for the dying. He makes some interesting points about how much humans fear death, even now with technological advances that removes much of the pain and suffering. We have convinced ourselves we fear the suffering, but it is really the unknown that death offers that strikes fear in our heart.
Image credit: OrphanWisdom.com
With Alzheimer’s and dementia patients, it’s so hard to know how much they still understand as they move towards their own dying process. I know my father was very afraid of dying, and especially of the thought of being placed in a coffin and buried. At least we were able to take that worry from him by having him cremated. But there is no way of knowing if those who are mentally compromised grasp the notion of death even in the moment it occurs. Perhaps it doesn’t matter at all to the dying, perhaps they are already on a different plane. Perhaps it is only those that are left behind who must grapple with the dying process.
I often think back to the morning my father died in the shower of the skilled nursing facility. Was there any recognition on his part that he was departing this life? Or was he trapped within the murky world of dementia until his last breath?
In ways I think we try too hard to make sense of the very natural processes of living and dying. We complicate matters by trying to rationalize every aspect of our world instead of allowing ourselves to feel both the pain and joy of living.
This quote from Stephen Jenksion is very simple yet profound: “Grief: It’s how you love all of those things in life that end.”
The big news today was the passing of former British Prime Minister Margaret Thatcher. A polarizing political figure, my father was definitely never a fan of hers. However, my father ended up having something in common with her when her daughter revealed in 2008 that Thatcher suffered from dementia. A powerful woman who was known for her sharp and keen intellect, her memory was destroyed by disease over the last several years of her life. It’s a cruel twist of fate for sure, regardless of how you feel about her political career.
Dementia does not discriminate between rich and poor. Political allies and world leaders Margaret Thatcher and Ronald Reagan battled dementia at the end of their lives. While it’s true that the economic burden of the disease is lifted for the rich and famous, it doesn’t take away the fact that all of the money and power in the world can’t cure dementia.
Alzheimer’s and dementia awareness advocates know the horrors of this disease and the damage it does to families. High-profile cases bring greater awareness, not that I ever want another person diagnosed with this dreaded disease. But in our society, the rich and famous do have power to highlight the various injustices of the world, from disease to poverty to racism. Maybe other world leaders will take note and reconsider better research funding for Alzheimer’s and related dementias.
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.
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.
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.