Alzheimer’s/Dementia
The Sunday Family Visit at an Assisted Living Facility.
Another Sunday Family Visit at the Assisted Living Facility.
This article, written by a fellow blogger, is beautifully descriptive and paints a clear picture – not just of the visual scene – but also of the emotions that exist in those who step into the world of their loved one with Alzheimer’s and other dementia.
The two poignant themes that resonate with me are: the development of resident boyfriend/girlfriend relationships within a memory care community; and the wonderful interaction between a great-grandson and his great-grandpa with cognitive difficulties.
I honor this blog author and her family for choosing to integrate a youngster into what could be a scary or challenging environment for a child. One of my articles, “Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia,” addresses the difficulties that families oftentimes experience in long-term care (LTC) settings. I can see that this family already figured out how to soften the hard edges to make the visiting experience beneficial to all.
I Can’t Win.
For those of you who have not experienced the stresses of caregiving, or being the point-person for a loved one with dementia or other debilitating disease – please read the above-linked article. It will give you a wee taste of:
a) the toll that caregiving takes on loved ones;
b) the toll of being a spouse with someone with dementia; and
c) the extreme frustration of trying to communicate with professionals while coordinating care for your loved one.
Please read this article – it will give you a healthy respect for your coworker, neighbor, family member – who is on duty 24/7 with caregiving tasks. Whether the caregiver is performing these tasks long-distance, as was the case for me in relation to my father’s care, or performing them on-site, the task is monumental and deserves a great amount of respect and understanding.
Alzheimer’s “exit-seeking” behavior at 35,000 feet.
At a certain stage during the course of Alzheimer’s or other dementia, a person can exhibit exit-seeking behavior. It is believed that the person exhibiting this behavior is actually trying to get home, or back to a familiar place, or even seeking a feeling of comfort rather than simply trying to escape from their current location.
This “exiting” can take place just about anywhere, even at the person’s own home – resulting in a dangerous scenario where a wandering vulnerable person could easily fall into any number of horrific situations because of their inability to get back to the safety of their home (be it a personal residence or a long-term care facility.) Exiting behavior also takes place in public places such as grocery stores or shopping malls, movie theaters, airports, and yes, even airplanes at 35,000 feet above the ground. This latter scenario happened on a recent flight I took from Dulles International Airport (DC area) to Seattle International Airport (Seattle, Washington.)
Just a half hour into our five-plus hour flight, a female passenger of approximately 75 years of age became very agitated during our ascent and before the fasten seat belt sign was switched off, she climbed over the passengers in her row, carry-on in hand, screaming all the way to the back of the plane from Row 34. I was seated in Row 35. “Wow, she must really have to use the bathroom!” I thought. A flight attendant tried to get the passenger re-situated in her seat to no avail. Complicating matters was the fact that the passenger was from another geographical continent and not only did she not speak or understand English, it was determined that other passengers who had flown with her from that same continent (not any relation or connection to her) also could not understand a word that she said. In essence, she was speaking gibberish. That was the first sign to myself and the flight attendants, that a) this woman was flying alone; b) she was in severe distress; and c) she most likely had some sort of dementia and was trying to exit her environment. Not an easy task, nor one any of the United Airline employees were about to allow. Read the rest of this entry »
Movies About Dementia and Alzheimer’s Disease.
Movies About Dementia and Alzheimer’s Disease.
Thanks are due to the author of this article, linked above, who provides a list of movies with an Alzheimer’s or other dementia story line. How timely, as my husband and I were discussing last night how a few of the novels we’ve read recently have an Alzheimer’s story weaved through the book.
I told my husband that this seeming anomaly is not surprising due to the pervasiveness of the disease in so many households throughout the world. In my family, my father died from Alzheimer’s complications in 2007, and my sister-in-law died at the age of 69 from mixed dementia. I know there are many of you who at the very least know of someone affected by the disease.
Too old to drive? Tips for families of elderly drivers
Too old to drive? Tips for families of elderly drivers.
My oh, my – such a difficult subject to broach with a family member when you know that he should put down the car keys and let others do the driving for him. The article linked above from NBC Nightly News is a good source of tips on how to handle this very familiar problem. I address this issue in my article: Driving with dementia: the dangers of denial. Although dementia is usually one of the most talked about reasons for taking away someone’s car keys, there are other reasons that are just as important that must not be ignored:
- Age-related slow reaction times;
- Medications that might cause dizziness and/or slow reaction time; and
- Impaired eyesight and hearing.
Not wanting to hurt a loved one’s feelings should not be the reason to avoid this subject matter. Let’s face it, your loved one’s safety and the safety of absolutely everyone else is at stake here. There are already so many dangers on the road with drivers talking or texting on their cellphones, driving under the influence of alcohol or drugs, doing any number of distracting functions such as eating, personal grooming, changing a tune on your I-Pod, or being distracted by children or dogs in the back seat. Now add someone who is impaired by age or cognitive disease and the risks to others increases greatly.
If you or a loved one are facing this important and difficult step, please read the attached NBC article linked above and also take the time to look at my article, Driving with dementia: the dangers of denial that provides encouragement for how you might take care of this very important matter of safety.
The Silent Cry of the Caregiver – AARP
Challenges of Providing Care for Spouse or Parents – AARP.
A 2012 issue of AARP The Magazine contained an exceptional and gritty article about caregiving. The focus is primarily on the role a spouse plays in taking care of a dying spouse – in this case, a wife with ovarian cancer – but the caregiver may also be attending to an ailing spouse or parent with a debilitating disease such as Alzheimer’s or other dementia.
In the article linked above, Bill Newcott discusses how he hunkered down and tried to fix what ailed his wife. The first paragraph of the article will grab you:
It’s the one vow that can really come back and bite you in the butt: “…in sickness and in health.” On your wedding day the phrase conjures up visions of tiptoeing into a sun-drenched bedroom with lunch on a tray for your wife…What you don’t expect it to mean is crouching in the harsh fluorescent glare of a hospital treatment room and holding her head to yours, trying not to faint as a technician inserts a large needle between her ribs to suction two liters of fluid from her lungs.”
The role of a caregiver is one that not many will be able to avoid. Currently across America 43.5 million people are caring for a loved one who is 50 years or older. I’ve done it. My brother’s done it. Chances are, you’re doing it too.
AARP Caregiving Resource Center is a magnificent tool for all of you who are involved in caregiving. If you’re sitting there saying you don’t have time to check out this caregiving resource, you need it more than you can imagine.
Please start taking care of yourself and check out the resources that have been developed just for you.
World Alzheimer’s Day.
The above video is amazingly dramatic and not just because it’s so well done and the music is so compelling. It’s dramatic because it speaks of facts about Alzheimer’s and other dementia that are hard to wrap your mind around.
Here’s one fact I’ll provide, and then I encourage you to watch this two minute video to increase your awareness of this insidious disease.
The Fact: there are 15 million caregivers currently living in America. If caregivers were the only residents in one of the states in the United States, they would completely populate the state of Illinois – the 5th largest state in the country.
Awareness is key – pass this link on to others so that greater attention is placed on this disease that is the ONLY cause of death among the top 10 causes of death in America without a way to prevent, cure, or even slow its progression.
Baby Boomers’ Greatest Fear: Loss of Independence.
A full-page newspaper ad for hearing aids, walkers, and safe bathtubs drew my attention the other morning:
“Seniors fear loss of independence more than death.”
I agree with that catch phrase, even though the final act of death brings its own fear level centered around how it will occur or whether or not it will be painful. But the loss of independence creates greater fear in me because of what it could mean:
- perhaps having to move out of my private residence;
- having my car keys taken away from me and being reliant on others for all of my transportation needs;
- being told what to wear, what and when to eat, and when to go to bed;
- not being able to bathe privately; reliant on someone else to make sure I get the job done right;
- speaking of which, needing assistance on the toilet OR having an alternate means of evacuating my bowels – ugh!;
- you name it – anything for which I am reliant, dependent, or beholden to someone else, scares me half to – well – death!
But maybe that’s just me. Maybe I’m super sensitive to this issue because of my work with vulnerable adults in long-term care facilities. So I asked friends, family, and others with whom I’m acquainted what stands out as their greatest fear in their Baby Boomer years. Here is a summary of numerous responses to my query:
- loss of independence which oftentimes involves chronic illness and/or dementia that drains the household finances;
- loss of independence resultant from dementia as it seems to be prevalent in so many families;
- loss of independence thereby putting the burden of care on my spouse;
- loss of mobility;
- flatulence!
I couldn’t resist listing the last response because it made me laugh while contemplating a subject matter that brings little humor to the table.
While taking a walk with a neighbor the other day, he concurred with the above, also adding that if a person had unlimited finances, loss of independence wouldn’t hurt as much: use of your own private driver, 24/7 caregiving in your own home, the best Chef money could buy so you’re not relegated to institutional “cuisine.” But you know, I’m not so sure that being able to afford all of the above would make me feel less dependent upon others than if I had a standard of living like most everyone else. Sure, the amenities are better, but the underlying cause for needing those amenities remains the same – the inability to do things for myself.
Now that we’ve all agreed that living an independent life is very precious to us – I know we understand more clearly why our parents or other loved ones fought the aging process every step of the way. I thought I was very empathetic to my father when he had to surrender his car keys. But now that I’m a wee bit older than I was at that time, I’m thinking I had no inkling of what my father went through as little by little he lost the independence he had enjoyed for eighty-some years.
But how can we prepare so as to avoid a complete loss of independence?
Well, if you find the magic formula, please let us all know. As for me and my household, I’m concentrating on the here and now in preparation for the future. Here’s my contribution:
- Exercise like your life depends upon it – because it does. That doesn’t equate to running marathons or riding the Tour de France, rather, it’s participating in a variety of exercise options to which you know you can commit. What works for you – not what everyone else is doing.
- Enjoy the food you eat but don’t be addicted to it. My husband and I have dessert every night and we use butter instead of margarine when we cook. Those are luxuries that we decided to enjoy while making sure that the rest of our diet is balanced and more healthy than not.
- Speaking of balanced, we love our wine, so nightly, we enjoy a glass during those post-workday (and post-exercise) moments while we catch up on our respective days. Oh, and we also enjoy another glass as it goes so wonderfully with dinner, don’t you think?
- Use your brain in ways that you don’t use it while at work. There’s still no fool-proof method of preventing Alzheimer’s or other dementia, but you’ll feel better about yourself if you continue to challenge what you know – and what you don’t know.
- Seek peace amongst the chaos. In my article, Where do you find peace?, I explore both how to find peace, and how to keep that peace from slipping away. Rather than repeat what I previously said, I hope you’ll find time to read my “peaceful” article.
Now it’s your turn. What are you doing to avoid what many of us fear the most? I know many Baby Boomers would benefit from hearing what you have to say. We’re all in this together – regardless of how far from each other we live – so let’s work together towards attaining the goal of remaining independent as long as we possibly can.
Unconscionable Crime: Stealing from a family member with dementia.
Are there worse crimes? Of course. Sexual and physical abuse come to mind. But in this article the focus is financial exploitation.
Here’s a headline, ripped from an August 26, 2012 Seattle Post Intelligencer (PI) article: “Son, wife fleeced dementia-stricken mom.” Here’s the good news – the son, Ivan Ljunghammar, and his wife, Deborah Jean, have been charged with felony first-degree theft. Here’s the bad news – this pair allegedly stole close to $513,000 dollars from Ivan’s 82-year old mother, facilitated by him being awarded control over his mother’s finances in 2007.
The victim and her husband (deceased) were very careful throughout their lives to make sure they had sufficient funds for when they truly would need them. They did an amazing job and as it turned out, those funds were needed. I guess her son and daughter-in-law figured they needed the money more. Added to that atrocity, the daughter-in-law knowingly hired a convicted felon to care for her mother-in-law. Who does that? The morally corrupt – that’s who. But I digress.
A desire for the parents’ estate compromises morality.
Although it’s true that strangers rob from vulnerable adults, family members do it more often than you can – or would care to – know. It’s the vulnerable adult with dementia who is most often targeted by strangers and family alike, and the family members who “legally” have access to mom and dad’s funds are the most hideous criminals. This family member becomes the Power of Attorney over finances and/or care needs for their mom and then abuse that “Power” by assuring mom that all is well and that she need not worry herself, all the while moving money away from mom’s accounts into their own.
Some financial exploitation is more subtle.
Moving mom or dad out of their current assisted living facility, in which the parents initially had carefully chosen to live, to a facility that is less expensive so that more money remains after mom and dad die. Holding back the daily care a compromised adult may need. Providing a bare minimum of personal belongings and clothing for their loved one – again, for the same reason. Do I sound harsh and judgmental? Gosh, I hope so. My work with the older population for the past 12 years has created a jaded view of how some family members respond to the needs of their parents. Thank goodness the percentage of good and loving family is greater than that of the bad and corrupt – but that does little towards softening the effects of a vulnerable adult’s emptied bank account when they need it most.
It’s unfortunate that media headlines are the primary thing that exposes elder fraud.
I know I personally don’t write about elder fraud enough in this Blog. My article, Financial fraud against the elderly: it’s a family affair, does draw attention to some of the examples I’ve addressed in this Blog entry, and I guess the more sensational occurrences of elder fraud will make this crime more visible. But I think the bottom line is that I want the impossible. I want our elders to be respected, not exploited, and I really want family members to grow a conscience.
Free Caregiver Resource eBook: 8/26/12 Only!
Free Caregiver Resource eBook: 8/26/12 Only!.
I should have posted this earlier than today, but I hope anyone needing this valuable resource – and it’s FREE today Sunday, August 26th!!!!! – will be able to take advantage of it. I know I will.
Thank you, Kelli, for being generous with this offering.
New ad campaign portrays caregivers’ call for help
New ad campaign portrays caregivers’ call for help.
A recent NBC Nightly News story focused on the role of caregiving as adult children take on the parental role vacated by their parents.
Imagine, if you can, handling all that you normally do in your hectic life and adding between 20 to 60 more hours to your workload. Haven’t arrived at that point yet? Of this potentiality you can be certain – all signs point to that being in your future. Whether your involvement is characterized by general care for an aging family member, or specialized care for a family member with cognitive decline, caregiving is most likely a task to which you have not devoted much attention.
It is said that 1,200 people per day are diagnosed with Alzheimer’s or other dementia. Let’s re-categorize that statistic: 1,200 caregivers are created every day.
The new ad campaign, a joint project between AARP and the Ad Council, was created to address the impact of family caregiving with the graying of the population. This ad campaign seeks to provide resources for those who are thrust into this role for which they are ill-prepared.
“Although they often don’t identify themselves as ‘caregivers,’ more than 42 million Americans perform some form of consistent care for older or impaired adult relatives or friends, according to a 2009 estimate. It can range from paying bills, to driving Mom to doctor appointments, to more hands-on care such as bathing, and even tasks once left to nurses such as the care of open wounds.”
And as many of us who have been in that caregiving role can attest, ones’ active role goes on and on when behind-the-scenes caregiving occurs, dealing with finance and insurance issues and the like during our alleged “free” time; a time when others are settling down to watch their favorite TV show or to read a good book.
This extraordinary AARP/Ad Council project is broader than another effort that is part of the new National Alzheimer’s Plan that can be found on the federal government’s website, www.alzheimers.gov. But both of these projects address the loneliness inherent with the caregiving task when so many caregivers feel, and become, isolated and adrift in an ocean of frustration and despair.
FINALLY some resources are being directed to the tidal wave of caregiving issues that Baby Boomers face. It may be too little too late, but it’s more than has been available up to this point. My hope is that the generation in which our children live will have sufficient resources to deal with us Baby Boomers because if our children think this caregiving task is going to jump their generation, they’ve got another thing coming to them.
And I apologize ahead of time for what awaits you.
Alzheimer’s: Laughter and Forgetting
Alzheimer’s: Laughter and Forgetting.
The attached article, from the magazine, Seattle Met, is a stellar example of a therapy that is not medicinal or chemical, nonetheless, it’s a therapy that works. Imagine that – and without drugs???
-
Frye Art Museum, Seattle, WA (Photo credit: Wikipedia) Viewing art at a museum and painting to express oneself afterwards. What kind of wackadoodle therapy is that?
It is a very successful therapy – that’s what! Here: Now is an arts enrichment program developed in partnership with the Frye Museum, Elderwise, and the regional Alzheimer’s Association, in the greater Seattle, Washington area.
The above article focuses primarily on the younger onset Alzheimer’s disease scenario, highlighting the experiences of Cathie Cannon and her partner, Sharon Monaghan, the latter who was diagnosed with this life-changing disease. As the author of the article, Ann Hedreen, states
Art – looking at it, talking about, making it – is powerful medicine, one that gives Sharon a way, however fleeting, to live peacefully in the moment, no remembering required. Even in its very name, Here: Now is about living in the moment.
So I’m going to let you discover the healing power of art, as told by those who can explain it far better than I ever could: Cathie and her partner, Sharon.
Driving and Dementia: is it a safe combination?
The linked article, above, from a fellow Blogger is very much worth the read as it’s just one of many stories occurring around the world when loved ones – whether because of dementia or just advancing age – face the decision of whether or not to put down the keys to a vehicle that can cause untold damage to the driver, and all those in his or her path.
In my article, Driving with Dementia: the dangers of denial, linked here, I address this dilemma that many families encounter. I hope both of these articles provide you with helpful information so that you are able to make informed decisions centered around the dangers of driving with an age or disease-related impairment.
Monday, August 13th was a beautiful day.
Why? Because at least 150 people attended my sister-in-law’s memorial service, held after she passed from complications associated with Alzheimer’s disease.
I know that the count of 150 is nothing compared to a stadium full of football, baseball, or soccer fans. But this 150 people showed up on Monday, the beginning of most people’s work-week, to honor my brother and his stepchildren, and memorialize a woman who impacted their world greatly.
How the day unfolded. Individual after individual arrived: some driving south from British Columbia, Canada, one person even flying in from Toronto, Canada, and numerous people driving north from California and Oregon state. At first it looked like those who set up the venue with numerous chairs had overcompensated in their attendance projections. That was not to be the case. By 2 pm, the scheduled start of the memorial service, additional chairs had to be set up. By 2:15 pm, some of us, most notably my brother, were sweating – not just because it was very hot on that particular Seattle, Washington day, but because the Officiant for the service had not arrived – and never did. But that’s not important.
Time for Plan B. I joined my brother outside just after 2 pm and I suggested that since the Officiant had not yet arrived, it was probably time to figure out Plan B. All the immediate family members sprung into action and the parts that would have been attended to by the Officiant were superbly handled by other family members. Even my brother – who had NOT planned on saying a word during the structured part of the service – walked to the front of the room and spoke beautifully about his wife’s journey to finally reach “home.”
Home is not just a structure with four walls. Quite a few times during my sister-in-law’s illness, she told my brother that she just wanted to go home. Now for those who aren’t familiar with Alzheimer’s or other dementia, oftentimes “home” means comfort, freedom, peace. That was the case with my brother’s spouse. She died on the American holiday, July 4th, also known as Independence Day. That day was her Independence Day, when she could finally flee to comfort, freedom, and peace, with a body – and mind – untethered by any restrictions.
Many blessings to my sister-in-law, my wonderful brother/spouse caregiver, Don, and all of the surviving family members. Monday, August 13th was truly a Celebration of Life and Liberty.
Pfizer Bapineuzumab Fails|Alzheimer’s Reading Room
Pfizer Bapineuzumab Fails, All Clinical Trials Discontinued | Alzheimer\’s Reading Room.
This is such disappointing news to the Alzheimer’s community which at its heart includes those suffering with the disease and the family caregivers suffering right along with them.
As someone who in the past has been personally involved with this disease as a caregiver for my father, I have experienced elation at the start of new drug trials – and defeat when those trials failed. This disease just seems to be one that evades all goodhearted and extensive attempts to slow down the disease.
A cure? That doesn’t even seem to be on any horizon I’ll see before the end of my days. But this insidious disease can’t even be slowed down, for heaven’s sake, so that the patient and all of his/her family can enjoy a better, longer, and less-impaired life.
What a said bit of news indeed.
Ambiguous loss – the experience of caregiver spouses
The article above reflects what is offered by Pauline Boss in her book Ambiguous Loss. I highly recommend the above Alzheimer’s Reading Room article as well as Ms. Boss’s book for any spouse who is taking care of their wife/husband at home or if your spouse is already living in a dementia care unit.
The author, Pauline Boss, explains it this way: when a loved one dies, we mourn the loss; we take comfort in the rituals that mark the passing, and we turn to those around us for support. That doesn’t happen when a loved one is still alive, but the losing occurs nonetheless. And this period of loss may go on for years prior to the spouse’s final departure through death.
One of the statements that Ms. Boss introduces is that “it is o.k. to love a shell.” Anyone who is married to someone with dementia knows that, in essence, a shell is what their spouse becomes with advanced dementia. But if the “surviving spouse” is able to draw on the memories of their marriage, they find themselves able to love their spouse regardless of the disease. Unfortunately, the memories remembered are no longer shared memories; joint reminiscing no longer occurs. Your wedding anniversary passes without any acknowledgement by your spouse, and although that’s just one of the burdens during this long period of loss, it’s a difficult one to bear.
Caregiving is a difficult, 24/7 task. I honor you on your journey, and I hope you find comfort and direction in the above resources, as well as the resources that the Alzheimer’s Association provides.
Important Article on Hiring a Caregiver Privately
Important Article on Hiring a Caregiver Privately.
The senior care industry is a dangerous maze wherein even the well-educated and well-intentioned providers of care fail to put any “care” in their caregiving. Whether at an assisted living facility or at home with private care, the path of least resistance is oftentimes the one taken and the accompanying attitudes reflect such feelings: “Man, I just gotta get over this shift! These people are driving me crazy!” “I know, I’ll just stick her in front of the TV while I catch up on my Facebook posts/soap operas.”
Don’t worry everyone – I’m not saying that there are NO ethical, compassionate caregivers, there definitely are – but attention must always be focused on those who don’t provide stellar care because the vulnerable amongst us are at the mercy of their care people. Those hidden in a private home are the most susceptible. Why? Because there are very few sets of eyes observing the day-to-day happenings. At a facility, the existence of ongoing traffic – family members, visiting ministries, long-term care ombudsmen/advocates – provides some sort of monitoring that a private home does not and can not provide.
The attached article – link above – is quite thorough. Please take the time to review it.
Getting lost in a “Peek-a-Boo” world.
A fellow Blogger, Frangipani Singaporenicum, submitted an excellent article, “Mom is Back,” about the hurdles experienced when her mother traveled by airplane back home after a visit with one of her daughters. Frangipani’s siblings weren’t fully aware of the breadth of their mother’s disease so they thought that the mother would be in good hands at the airport because they had arranged for an airport escort to get the mother to her airplane destination.
Unfortunately, what could go wrong did go wrong. “Frangipani’s” mother has mixed dementia, Alzheimer’s and vascular dementia, and found herself in unfamiliar surroundings when she became separated from the airport employee – a stranger in the mother’s eyes – who was supposed to assist her. Getting lost in an unfamiliar environment is something that comes quite naturally to those with any type of dementia. And as often happens when a person is lost, we try to get un-lost. That attempt brought her mother to another airline terminal where a kind gentleman, noticing her distress, found the assistance she needed to get on the correct plane at the right time.
Those of us who have children – and please bear with me while I make this comparison – know how easily a child can wander away from our purview. We make a quarter turn at the grocery store to get a box of cereal off the top shelf and “POOF!” our child is nowhere to be found. I’m very familiar with this feeling because it happened to me many years ago when my adventurous daughter wandered away – causing me near cardiac arrest – and was subsequently prevented from exiting the grocery store by a Good Samaritan grandmother who knew better than to let my daughter run out into the parking lot. “But I only turned away for a second!” That’s all it takes.
So too can a person with dementia wander away because of something that attracted him; or more likely, with your back to him, he didn’t recognize you any more and walked away to try to find you. “But how can I keep my eye on him at all times?” You just have to.
SOME TIPS OF THE TRADE.
Public restroom challenges. If you or your loved one needs to use the bathroom, find one of the family bathrooms that now exist in many public places so that your environment is controlled, and everyone’s needs are met. Don’t think for a second that you can say to your husband, “George, you stay here while I run into the ladies’ room. I’ll just be a minute.” Be prepared to call security when you come out of the ladies’ restroom because in George’s mind, you disappeared, and the time frame of a minute means absolutely nothing to him. And forget about sending your husband into the mens’ room by himself to meet his potty needs. You’ll be waiting, and waiting, and waiting, and he just a) may not do his business; and b) may not come out on his own. If no family bathrooms are available, stand at the entrance to the public restroom and announce yourself: “Woman entering with husband who needs assistance!” You’ll find that those within will cover up what needs covering and not call security on you.
Medic-Alert jewelry. The Alzheimer’s Association strongly recommends purchasing a Medic-Alert/Safe Return device which provides 24/7 emergency response service. At least if your loved one gets lost, they will be reunited with you sooner. This service is available in 50 countries, and in 140 languages. The service speaks for itself so please check the link attached to research the many benefits of this membership service that, quite frankly, brings priceless peace of mind and provides a healthy dose of safety for your loved one.
Now they see you – now they don’t. The examples cited above would not be complete if I didn’t add a personal experience from my days of being my father’s primary long-distance caregiver. My dad lived in a Continuing Care Retirement Community (CCRC) in Southern Oregon. When first diagnosed with Alzheimer’s he was very functional and remained in the assisted living apartment on campus that he had shared with his wife prior to her death in January 2007.
I stayed at a nearby hotel when I visited my father but spent most of the day with him on outings and/or spending time with him in his one-bedroom, one-bathroom apartment. At one point during an apartment visit, I announced to him that I was slipping into the bathroom, 10-feet away, and would be just a minute or two.
I was glad to have locked the bathroom door because partway during my “sit” dad was frantically jiggling the doorknob from the bedroom side of the door shouting, “Irene! Where are you?! Are you o.k.? What’s going on?!!” I was less understanding at the time and returned my own crazed shout of “Dad!!! Leave me be! I’m just going to the bathroom!!!” Knowing what I know now, I would have exited the bathroom and apologized for frightening him, and made every attempt to make him feel safe again. As Oprah Winfrey often says, “We do better when we know better.”
This unintended “peek-a-boo” event proved to me that my father did not have an understanding of the passing of time, but more importantly, that if he couldn’t see me, I wasn’t there. Back to the example of children, but this time, you’re the child.
You’re at play in your bedroom, having just left your mommy gleefully singing in the kitchen while she did the dishes. Your dolls are lined up on your bed, you’re engaging them in discussion, and all of a sudden you notice that mommy isn’t singing any more. You toddle out to the kitchen, and mommy isn’t where you left her!!! “Mommy! Where are you?! Mommy – I’m scared!!! Help me Mommy!!!!!” Your mother steps out of the adjoined laundry room and calms you down – “Irene, I was just five feet away; I didn’t go anywhere, I’m right here!” You run into your mommy’s arms and feel safe again.
Alzheimer’s and other dementia are very unpredictable diseases. What can be predicted, however, is that the onus will always rest on us to compensate for our loved one’s challenges. As I’ve mentioned in previous articles addressing dementia, we have the ability to adjust to the diseased person’s reality; not the other way around. It’s hard work for us, but it’s an impossible task for them.
But how am I supposed to do THAT?
But how am I supposed to do THAT?.
What a terrific article provided in the above link from the “Taking Care of Mom and Dad” blog site. The information provided in this article is valuable, and as Kelli mentioned on her blog, it’s not just specific to the state in which it originated, Oklahoma. The information provided is applicable everywhere because let’s face it – every caregiver pretty much needs the same questions answered and this site has many one-size-fits all solutions for all caregivers who are grasping to stay afloat on their caregiving journey.
This same website can also direct you to your own state’s valuable resources by clicking on the applicable section on the Homepage. It’s as easy as that! And don’t we all need something to be easy every once and awhile?
ABSOLUTELY!!!!!
Life’s final deadline.
In the past year, I have lost two coworkers to cancer. Just recently another coworker left his job due to – you guessed it, cancer – so he could spend what remaining time he has with his family. These wonderful people were given a death sentence. They had a head’s up as to when their life’s end/deadline would occur.
Because I care for these people, I’ve been grieving and pondering what their remaining days and weeks were like.
What does one do when they leave their doctor’s office after receiving a fatal prognosis and a guesstimate of how much time remains for them? Of course the initial news floors them and their emotions run wild with rawness, sadness, fear, and maybe even extreme anger. But then they get home, hopefully surrounded by at least one loved one, and…then what?
I know much discussion will ensue of an emotional, practical, and perhaps even legal manner. That goes without saying.
But do you then get out your bucket list and see if any remaining items can be checked off before time runs out?
Or how about a game of Scrabble? Does that seem too mundane and unimportant in light of life’s waning hours?
I’m not trying to be cavalier about this matter and I hope I’m not coming off as insensitive. I’m really troubled by even thinking about having such a prognosis and filling out my remaining days in a valuable way. And again, I’m thinking about my coworkers’ final days and wondering what those days were like for these stellar people. How did they manage?
Personally, I have a very realistic outlook on death – it’s certainly inevitable. I’ve accepted the fact that no one can escape it. And of course I have my preferences on the manner in which I die. For example, if I’m fortunate, I’ll follow in my mother’s footsteps when back on September 24th, 1994, she went to bed none the worse for wear, and never woke up again. Since no autopsy was done, we don’t know the actual cause of death but on this my family can agree – if we have the choice, we’d like to be taken by surprise – in as pain free a manner as possible. If I’ve left no statements unsaid, no deeds left undone, I’d rather not have a calendar in front of me crossing out each remaining day in my life.
How would I fill my days if, like my coworkers, I’m given a death sentence of a finite period of time?
I don’t have the answer, so if by chance you’ve been part of life’s final deadline with a loved one or close friend, what proved valuable to you and your loved one? How did you manage not to think of the remaining time every minute of every day?
In short – how did you survive the process?
Seattle Times: Seniors for Sale, Part 6
In yesterday’s post, a Seattle Police Detective defined elder abuse as:
- sexual abuse
- physical abuse
- financial exploitation
- neglect
In Part 6 of Seniors for Sale: Placement perils and successes, Michael Berens, Seattle Times reporter, delves into the senior housing placement industry, focusing on one placement company that placed a client in a Tacoma-area Adult Family Home (AFH) with a history of safety and health violations – elder abuse – even a fatal event, but because the placement company had not done its research, it was not aware of the home’s previous infractions and kept placing unknowing vulnerable adults in the home’s care.
Many of these placement service companies operate state-wide and/or nation-wide, and believe that there is no way that they can help as many people as they do if they are required to visit each and every home/assisted living option available to the public that they are trying to assist. These companies are oftentimes characterized as Bed Brokers – an industry that is growing exponentially without much scrutiny or State controls.
CAVEAT: Just as in every assisted living situation – there are good senior housing options and there are bad senior housing options – so too there exist reputable senior placement companies, and not-so-reputable placement companies.
I personally think that these companies can be helpful to those looking for a senior housing option that suits their, or their loved one’s, needs. I caution those using these agencies, however, to understand that not every option out there is listed with placement companies. If a senior housing company does not choose to be listed with a placement service company, that option will not be offered, even if that particular housing option might be the very best choice for some families: cost-wise, location-wise, and even service-wise.
In a news update, Michael Berens’ article, State gets tough on referrals for elder care, we see that attention is now being directed at these placement referral companies in the hopes that those they serve – vulnerable adults in need of some sort of daily care – are protected from those companies who are simply aiming to make a profit at the most vulnerable time in an elder’s life.
As I mentioned in previous articles found in my blog category, Senior Housing, there are numerous resources available for those looking for senior housing for themselves or a family member. Please go to that category and type in a search term in the space located on the right-hand side of the page to find the topic that interests you most.
Seattle Times: Seniors for Sale, Part 5
Part 5, of Seniors for Sale: Hiding Harm: the human toll, is one example of the lack of reporting that goes on in some assisted living residential settings – in this case – an Adult Family Home (AFH).
When you watch the video link above, you’ll be shocked at how a particular accident happened – and its after effects on the victim – and you’ll be horrified at how long it took before it was reported to the police.
Perhaps this statistic will provide a partial explanation:
only 16% of all incidents of elder abuse are reported.
Not only are many caregivers not reporting incidents of abuse that occur; surprisingly, family members fail to get beyond the denial stage when they discover that their loved one just might be in danger in the very location entrusted to his/her care. They can’t believe that the caregiving solution they found for their loved one has turned out to be disastrous in every way.
The police investigator for this case states the following:
We don’t tolerate domestic violence, but that’s not always the case with elder abuse.
The final episode of Seniors for Sale will be submitted tomorrow, Saturday.
Seattle Times: Seniors for Sale, Part 4
Seniors for Sale, Part 4: Suspicious Deaths
It doesn’t get much worse than the video attached above. Two suspicious deaths are the focus of this episode of the Seniors for Sale series. The two cases discussed in this video occurred at the same Adult Family Home (AFH), Houghton Lakeview, located in a very swank area of Kirkland, Washington. It goes without saying that this Adult Family Home was shut down.
Family members whose loved ones died at the hands of these caregivers speak out about how the abuse was discovered, and how the State of Washington did, or did not, effectively respond.
One of the family members whose father died at the hands of the caregiver/owner of the Adult Family Home poignantly stated:
It’s unfathomable to realize that we were paying these people to abuse our loved one!
Conviction results (attached) of one of the suspicious deaths was reported by the same Pulitzer Prize winner, Michael Berens, who wrote the series, Seniors for Sale.
Seattle Times: Seniors for Sale, Part 3
What Needs to be Done? is the subject matter of Part 3 of Seniors for Sale. In this episode, the viewer is encouraged to do research about a facility, Adult Family Home or otherwise, prior to considering a move to that senior housing alternative. In my article, “Avoiding the pitfalls of selecting Senior Housing,” I provide helpful resources that everyone can use in order to find out:
- if any complaints have been filed against a particular home;
- if the State issued any citations, and the nature of those citations;
- if the Long-Term Care Ombudsman office received particular complaints and the nature of those complaints.
No one has to go into this housing search blind. Please view the very brief video provided in Part 3 of this Pulitzer Prize winning series by Michael Berens of the Seattle Times, then click on the attached article that I’ve provided for your assistance. Although the links I provided relate to resources in the State of Washington, similar resources exist nation-wide. Check with your State Ombudsman office or Department of Health and Social Services for your State’s equivalent.
Seattle Times: Seniors for Sale, Part 2
I provide Part 2 of Seniors for Sale – Janice and Elaine.
The attached link connects you to Part 2 of 6 of this Pultizer Prize winning series written by Michael Berens of the Seattle Times. Please don’t give up hope. Once all 6 of these episodes have been provided – one per day – I will provide you with story outcomes and repercussions in the Adult Family Home industry in Washington State. Keep in mind – as I indicated in my first submission – although this horrific situation took place in the State of Washington, this type of abuse goes on in other states, and countries as well – whether in group homes, nursing homes, assisted living facilities or similar senior residential settings.
Are there stellar Adult Family Homes (AFHs) in Washington state? Absolutely. But of the 2,900 AFHs in the state, 446 of those were cited for major violations since 2010. The industry certainly was not regulated well enough to avoid such violations. That is changing.
Seattle Times: Seniors for Sale, Part 1
My local newspaper ran an investigative report about the Adult Family Home (AFH) industry in Washington State. Depending upon where you live, a similar assisted living home may be called a Group Home.
In Washington State, no more than 6 residents can live in an Adult Family Home. These “businesses” popped up all over Washington State over the past several years as entrepreneurs realized how much money they could make taking in residents and charging thousands for rent and resident care. At this writing, there are close to 2,900 AFHs in the state. Since 2010, 446 of those were cited for violations of health or safety standards. Caveat: there are many Adult Family Homes that are doing an extraordinary job, but it’s the bad ones that make the Headlines and that’s the way it should be.
June is Elder Abuse Awareness Month. I thought it appropriate to provide Michael Berens’ series, “Seniors for Sale” in six parts this week, but I provide it with a warning that this Pulitzer Prize winning expose can be very difficult to read, and watch. Nevertheless, awareness is key, so I hope all will benefit from his extensive work on this piece. Whether you live in the United States, Singapore, the United Kingdom, or elsewhere globally, abuse occurs world-wide and it’s the vulnerable adults in this world who are its targets.
Seniors for Sale – I provide this link to Part 1 of the series – “Ann.”
ADI World Alzheimer Report 2012 Caregiver Survey a Must DO | Alzheimer\’s Reading Room
ADI World Alzheimer Report 2012 Caregiver Survey a Must DO | Alzheimer\’s Reading Room.
I know that all of us want to see an end to Alzheimer’s disease. Many of you have Alzheimer’s or other dementia, and even more of you are helping to take care of your loved ones.
Rarely has there been an opportunity to provide input in such an international forum. This survey can be completed around the world. It is not just intended for one country. The primary topic of the attached survey revolves around the stigma attached to dementia. You will be asked questions about how your loved one is treated, how you are treated as the caregiver for your loved one, etc. Your responses are entirely anonymous. You will not be asked to provide your name, nor a physical address, nor your e-mail address.
I hope you’ll consider filling out the online survey. It was VERY quick, so you need not spend a lot of time on the survey.
The results of this survey will appear on the Alzheimer’s Reading Room website on World Alzheimer’s Day – Sept. 21, 2012.
Raise the retirement age and cure boredom?
In an earlier article, “Retirement planning – its not what you think,” I talked about the planning required to have a quality of life after retiring from one’s job that relies on spending your time in a way that pleases you, and benefits others.
My closest friend, Sophia (not her real name), is in her 80th year of life and for the seven years that I’ve known her, Sophia has struggled with boredom, but not just boredom per se. Sophia wants to matter; she wants to make a difference; she wants to contribute to the world around her. In a recent e-mail to me, Sophia said:
“There are too many active Seniors roaming around the coffee shops and Malls wondering what to do next. Even my friend Walter, at age 97, felt a sense of accomplishment yesterday when he washed all the bed linens and remade the queen bed – this done using his walker, back and forth.”
Sophia epitomizes the bored retiree that I discuss in my article, “Voices of the bored retirees.” We often think that when we retire we’ll be satisfied with being able to golf whenever we want; sleep in as long as we want; work in the garden whenever we like, and read all the books we’ve stacked up, but not had the time, to read. My father was one of those retirees who longed for the opportunity to be on the golf course as often as he wanted. A month post-retirement, he was bored with it all.
Another quote from my friend Sophia: “I really believe that much that we call Alzheimer’s is just a simple lack of interest in remembering what no longer matters. There is definitely a veiled space that occurs now and then when it is either too painful to remember, or not worth it to try. This, in addition to physical pain and boredom, can reach a kind of black hole.”
I know my friend very well, so I know that she doesn’t support that type of Alzheimer’s reasoning, but what she said really resonated with me. Too often we focus too much on what doesn’t matter, and far too little on what can matter greatly in our remaining years. Gerontologist S. Barkin believes that we have a responsibility to actively walk through our retirement (or Baby Boomer) years:
“What do we want to do for the remaining time in our life? We all should be mining our experiences and the wisdom therein to help with our present, and our future paths.”
Most of us, even when we’re enjoying the relaxation we so richly deserve in our retirement, truly strive to create a new purpose for our life. We want a reason to get up in the morning. We strive to contribute to the community around us.
Does the retirement age need to be raised in order for that to occur? Or can we be just as effective, and less bored, by cultivating a lasting purpose after we’ve entered the long sought-after retirement phase of our lives?
O.K. BABY BOOMERS OUT THERE:
- What’s your plan?
- What’s working – or not working – for you?
- What’s your cure for boredom?
Conversation with a Mentor.
This article from a fellow blogger who happens to live in Singapore is very timely in that it discusses how a caregiver might sort out their thoughts when caring for a loved one with Alzheimer’s or other dementia.
I really enjoy this blogger’s way of writing about her journey – she’s a caregiver for her mother.
I hope you enjoy it too!
Alzheimer’s Reading Room: Joy vs Grief.
The Alzheimer\’s Reading Room is the number one source of life news for the entire Alzheimer\’s community.
via Alzheimer\’s Reading Room.
The attached article reflects the sentiments of Bob DeMarco, a son who took care of his mother Dotty for over 8 years during a difficult Alzheimer’s journey. He rarely complained – which is stellar, but not required – and now a few weeks after her death, he’s falling back on the memories and finding joy amidst the grief.
Living: the ultimate team sport 