I’m thrilled about the above Blog article that just happens to have been posted today, my 60th birthday! There is a lot of substantive content in my fellow blogger’s posting: a link to a New Yorker Magazine article by Rebecca Mead, titled A Sense of an Ending; Phillip Toledano’s photographs of dementia; and, of course, the Blogger’s own contribution to the topic. The aforementioned blogger, Kathie Ritchie, maintains an exceptional blogsite, http://www.mydementedmom.com.
I hope you’ll visit all of the above – and be better off as a result.
In my post, President Obama says the “A” word: Alzheimer’s, I provided some Alzheimer’s statistics that focus on those who are predicted to be diagnosed with Alzheimer’s or other dementia in the years to come. I also talked about caregiver statistics.
One statistic that really resonates with me is the following: a new caregiver is set into action every 33 seconds because someone will develop Alzheimer’s every 33 seconds. In actuality, the stats are far greater than that. Caregivers are “created” every second of the day because there are countless diseases requiring the assistance of someone just like you and me – an unpaid caregiver for a loved one. I use the distinction of “unpaid” so as not to be confused with those who work as caregivers in the health care industry.
The following statement is attributed to former First Lady of the United States, Rosalynn Carter:
There are only four kinds of people in the world – those who have been caregivers,
those who are currently caregivers,
those who will be caregivers, and
those who will need caregivers.
I really don’t think there’s any way around it. How about you? Have you dodged the caregiver or being-cared-for bullet yet?
The above link, from a December 2012 NBC News report, addresses the conversations that many of us – well, many of you anyway – still need to have with your parents. (My mother died in 1994, my father in 2007 – those conversations have long since taken place.) In many respects, my brother and sister and I were fortunate because in our family, the topic of sickness and death seemed no different from discussing that night’s dinner menu – perhaps even easier. That’s just how it was in our household growing up. But I’m aware that universally, that is not the case.
In my article Cost of Dying: planning for a good death, from advance directive to talking with your family, I’ve attached an exceptional article about a few people’s experiences discussing how their loved ones want to die. By now I may have lost some of you, but bear with me. There’s a reason why I’ve chosen to address this topic.
GIFTS. Who doesn’t like receiving gifts? Most of us get a kick out of being handed a package with a fully wrapped surprise within and told to “open it!” “What, for me?” Yes – for you. Perhaps the gift is something we didn’t expect, or we’ve sufficiently hinted our exact wishes and finally someone gifted us with that long sought after item. Fun, isn’t it? Someone cared enough to gift you with something you’ve always wanted or you receive something that you didn’t know you wanted, but it turns out, you do!!!
THE GIFT THAT KEEPS ON GIVING. A few years ago, I succeeded in convincing my wonderful hubby that we needed to put together our “last wishes” which of course includes a Will, but more importantly, an Advanced Health Care Directive. My husband is one of those who isn’t exactly comfortable sitting around the dinner table – or any table for that matter – talking about death. I get that – I really do. So I couched this discussion by talking about what a gift my parents, and his parents, gave their families by specifically outlining what to do when it came time to do something.
When your loved one is heading towards the great beyond, it’s comforting to already have his or her wishes on paper and ready to execute – no pun intended. I’ll use my father as an example. My father died at the age of 89 on October 13, 2007. Official cause of death was prostate cancer but advanced Alzheimer’s was a huge factor in his death. There is no way my father would have a) survived cancer surgery; and b) even wanted cancer surgery at that stage of his dying. His Advanced Health Care Directive very clearly stated his wishes and us three siblings had copies of that document and respectfully went along with his wishes. Dad saved us the stress of making an extremely difficult guesstimate of what he would have wanted in the midst of that situation. His dying was already an emotional experience so I can’t imagine having some sort of discussion about when to stop treating his illnesses.
The legal document, drafted years earlier, was drafted for this specific time. Even if dad had been conscious – and he was not – his dementia would have prevented him from making a well-informed decision. If ever there was a time when dad’s gift was ready to be presented – this was it. That gift allowed us to spend our last hours with him simply loving him; singing to him; and telling him how grateful we were to have him as our dad. Beautiful.
You don’t have to wait until you are 50 years or older to put your wishes in print. Old people aren’t the only ones dying who require some sort of affirmative decision-making. Someone in their thirties could be in a horrific vehicle accident and end up lingering on the precipice of death. A forty-year old person could have a stroke and be on that same precipice. It’s never too early to do something about your exit from this world as we know it. You can always change your mind later – you decide that you do, or do not, want hydration, so you revise the document. That’s the beauty of word processing – it’s changeable, and once you get that revised version documented by witnesses, you’re good to go! Literally.
If you choose to use an attorney, you can go through the local Bar Association for referrals or you can attempt the same outcome by doing it yourself. Many office supply stores have boiler plate legal documents you can readily purchase – but be certain to purchase the forms that contain the required legal verbiage for your state or territory. Additionally, organizations such as Compassion and Choices provides forms that you can download from their website, even a form that has a Dementia Provision. Who woulda thunk? Not me.
The Holidays may be over, but the season of gift-giving is not. Won’t you consider giving your loved ones one more gift this year?
This Blogger, Richard Kenny, really has a way with words as he describes the challenges – and sometimes the joys – of his caregiving role as a son to his mother who has Alzheimer’s and to his father who struggles to be the spouse of a wife with Alzheimer’s.
Very much worth the read – and I don’t just mean this one article. Many of Richard Kenny’s observations and musings so clearly reflect his day-t0-day frustrations as well as his somewhat new found ability to adapt to every unforeseen circumstance.
When the Mind Says Goodbye is a thoroughly touching mini-video (less than 5 minutes long with beautiful music accompaniment) chronicling a married couple’s journey as best friends in early childhood, all the way through their marriage – currently a more than 87 year-long relationship.
This couple, George and Adriana Cuevas, show us how a lack of words does not have to limit ones ability to relate to, and comfort, a loved one. I hope you will take the time to observe this loving couple as they walk through the hallways of Adriana’s memory care unit, and as they sit side-by-side with only touch and eye contact as a communicator.
It seems to work for them. How lovely that their marriage commitment lives on, even when the mind has already said goodbye.
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 »
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.
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.
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???
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.
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.
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.
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!
I found the attached article very interesting and promising. Anyone who has been a family caregiver, or a professional caregiver, knows the seemingly insurmountable struggle to engage with someone who has Alzheimer’s or other dementia.
My work path in life always includes those with dementia so I will definitely look into this therapy. But let’s face it – as us Baby Boomers move onward into our future, we’re already looking for ways in which to brighten our memories when what we’re searching for may be on the tip of our tongue, but it refuses to jump off!
The article attached above is from a blog diary kept by Dotty’s son, Bob DeMarco, from the inception of Dotty’s diagnosis of Alzheimer’s to the end, which is very near almost nine years later.
Dementia care is a very high station in life. That’s what Bob DeMarco believes, and so do I. Dementia caregiving is one of the most difficult challenges anyone can face and not everyone excels at that task. Bob has indeed excelled and there are many of you for which the same can be said. I sincerely believe if you can get through that journey, you can handle just about anything life can throw at you. My caregiving journey with my father ended in 2007, so I am speaking from experience, not just with an educated opinion.
Is Alzheimer’s an automatic death sentence? Many in the medical community, including the Alzheimer’s Association, will declare that indeed it is a death sentence. I think one of the reasons why so many believe that to be the case is that at this point, there is no cure. There are no thoroughly effective medications or treatments that cure it or stop it in its tracks. A person gets an infection? A regimen of antibiotics is prescribed and poof – the infection goes away. Someone is diagnosed with a particular cancer – a treatment regimen is prescribed and as a result many cancer patients become former cancer patients. Not so with Alzheimer’s or other dementia.
There’s no such thing as a “former Alzheimer’s patient.” At this point, the only former Alzheimer’s patients are those who have passed on. If I interpret correctly what Bob DeMarco said in the above attached article I think he may be saying that if you start your Alzheimer’s/dementia journey convinced that the disease is a death sentence,those involved, especially the caregiver, might not work nearly hard enough to make the patient’s remaining life one that can be called a dignified, quality life.
“Surviving” a disease takes on an entirely new meaning. It sounds as though Bob set out to make sure that his mother, Dotty, had a quality of life that she was able to live for an extended period of time. For that reason he can confidently say the following: “We did survive. We are survivors.”
Well done Bob and Dotty. You are beautiful examples of how to be a survivor when the odds are stacked up against you.
Alzheimer’s and other dementia don’t hold a candle to the positive effect music has on its victims. The attached video, a brief portion from the documentary, Alive Inside, is entitled: “Music and Memory, an old man’s reaction to hearing ‘his’ music.” It illustrates so beautifully how music can unlock the brain that is addled by memory loss resultant from injury or disease.
I hope Henry’s story, and his dramatic transformation, encourage you.
You’re Looking at Me Like I Live Here and I Don’t | Documentary about Alzheimer’s | Independent Lens | PBS
I hope everyone has an opportunity to see this PBS documentary which airs March 29, 2012. What an eye opening foray into the day-to-day life of a person whose own identity escapes them.
This story will horrify you as it does me. This unethical, criminal, hideous, inhumane action helps to explain why I am committed to my volunteer job as a Long-Term Care Ombudsman (an advocate for residents in long-term care facilities.) God help the person who ever attempts such a thing with one of my loved ones.
This article from The Alzheimer’s Reading Room provides much wisdom and guidance when it comes to making choices when communicating with someone with Alzheimer’s or other dementia. As I’ve mentioned in earlier articles on my Blog, “If you don’t insist, they can’t resist.”
No is the biggest, most frequently used word in the Alzheimer’s World Dictionary. This article, reblogged from the Alzheimer’s Reading Room, addresses the difficulties of communicating with a person with dementia. Remember – don’t always take No for an answer.
There is no such thing as easy caregiving – anyone who has been, or is currently, a caregiver for a loved one with Alzheimer’s or other dementia can attest to that fact. The good news, however, is that every once and awhile we’re fortunate enough to be exposed to glorious snippits of wonderfulness that help us through the day. Here’s hoping that this link does just that for you.
A trusted family member would NEVER financially exploit their loved one – right?
All classes of people, and most age groups, become victims of financial fraud. The elderly, however, have been hit particularly hard. A recent Puget Sound Business Journal article (a Washington State publication) provides some astounding statistics for the state of Washington:
- reports of elder abuse grew by 30% in five years;
- 4,121 cases were reported to Adult Protective Services in all of 2010 and that number was already reached by November of 2011;
- the Washington State Office of the Attorney General only receives a fraction of the financial abuse cases because many go unreported; and
- the National Center of Elder Abuse in Washington, D.C. states that only one in 25 cases of elder abuse are ever reported.
So who are the perpetrators? These thieves are neighbors, caregivers (family related or not), best friends, and trusted financial professionals.
But nationally, nine out of 10 financial exploitation cases involve family members.
This type of abuse begins innocently enough “let me help you pay your monthly bills mother.” The adult child becomes a signatory on the bank accounts, keeps up with mom’s bills, but also pays him or herself a little here and there and before you know it, mom doesn’t have the financial means to live out her days. Certainly most family members are trustworthy and respectful of their elders and look out for their elders’ best interests but the statistics certainly paint a horrific picture, don’t they? And what’s worse, if the elderly victim has Alzheimer’s or other dementia, it doesn’t take much effort for anyone – family or stranger – to enrich their own bank account while draining mom and dad’s.
It’s virtually impossible for government agencies to monitor cases of elder abuse. The local agencies that help the indigent elderly are strapped financially. Budgets are being cut resulting in decreased staffing, and caseloads that are unmanageable and overlooked – but not for lack of trying!
So what can you do to protect those vulnerable adult victims that seemingly go unnoticed in our local communities? I provide some suggestions in my blog article, Elder Fraud: a few things you can do to protect your loved one. This article assumes that family members are trustworthy and selfless in their interests. Fortunately, that’s probably you, but obviously, elder fraud is a national problem so it’s vital that everyone be reminded of how easily thieves can take advantage of the older generation.
I’m certain this topic affects many of you and at the very least, angers the rest of you. I covet your input and look forward to your thoughts on this matter.
In the book, Gabby, by Gabrielle Giffords and Mark Kelly, Congresswoman Giffords’ husband, Mark, provides statements about optimism that have greatly encouraged me. Here are just a few:
- “I saw how optimism is a form of therapy and hope is a form of love.”
- “Doctors at TIRR, the rehab hospital, told us that our optimism and encouragement could make a great difference in Gabby’s recovery…”
- “To be of help to a brain-injury patient, we were told, families need to find a way to balance pragmatism and optimism.”
In a Time Magazine article published December 13, 2011, Congresswoman Giffords addresses the struggles she and her husband have endured as they continue to adjust to the “new normal” brought about as a result of a bullet that pierced her brain on January 8, 2011 when she was reaching out to her Congressional district in Arizona. So many of us have new normals as we walk, or fall, head first into Baby Boomerism. This normal may involve a loved one who has a fatal or debilitating illness. This new normal may be characterized as our own bodily/physical struggles inherent with our age. Each of us have some sort of chronic something-or-other that inhibits our ability to function at 100%.
What is the chronic something-or-other that inhibits your ability to function at 100%?
The above question is a rhetorical one. Neither myself nor the public need to know the specifics – but you know the specifics and you’re the one making long-term adjustments as a result.
What processes do you follow to unearth the optimism that exists somewhere in your psyche? How do you overcome your personal challenges so that you end most days victorious, rather than defeated?
For me, it’s acceptance. For me, acceptance doesn’t mean giving in or giving up; rather, acceptance means being o.k. with how things currently are and finding ways to succeed within that new normal. This mentality or attitude is more optimistic than you may think. Again, for me, I decided to allow optimism to nurture the hope that oftentimes is buried deep within me. Things could very well change for the better – which doesn’t have to be defined as being 100% problem-free. Nope. If I garner optimism at the start of each day, I’m making a conscious and aware decision to acknowledge and celebrate even the smallest of victories that might occur in the next 24-hours. If I wait for a humongous, star-spangled mega-victory, I may wait forever. Instead, I attempt to be aware of even the smallest improvements/goodnesses in my day so that my life is filled with many victories to celebrate. The previous sentence says that “I attempt” to garner optimism throughout my day. I don’t always succeed – but I try.
What small victory can you celebrate today?
What works for you? The rest of us would love to celebrate that victory with you.
The more a person becomes dependent on others, the more protection he needs. A person with dementia needing the assistance of others is considered a vulnerable adult. He can’t defend himself or speak up for himself. He can’t demand exceptional care, courtesy, and respect. As his advocate – that’s where you come in. When he doesn’t have a voice – you step in to be that voice. Your reward will be great if you succeed in doing so.
Part of what I do in my working life is to advocate for vulnerable adults by doing what I can to promote dignity and quality of life for those I have the privilege to serve. As a family member, or good friend, to an adult with dementia, your task is a monumental one because along with your caregiving role, you must also excel at the task of advocacy. In my blog article, “Be an Advocate for your Loved One” posted on this blog November 14, 2011, I discuss the various ways in which you can advocate for your loved one. This current article is the last article in my “Understanding Alzheimer’s and other dementia” series and it addresses the issue of dignity and privacy.
As those of us who have, or have had, loved ones with dementia we know without a shadow of doubt, that our loved one’s current condition does not reflect the pre-Alzheimer’s/dementia person. A grandmother who previously never spoke the “F-word” now speaks it as though it were just another word in her vocabulary. A previously modest and distinguished gentleman now routinely removes his clothes in front of others, and/or may be inclined to grope his caregivers or other residents. A former globally recognized businessman, sought after for his abundant knowledge in his field, now needs others to feed him and has lost the ability to string a meaningful sentence together. Our loved one’s new normal is shocking to those of us who are close to the person with dementia, and completely foreign to those who are not.
Keeping people informed about your loved one’s condition.
Those who definitely have an attachment to your loved one: friends, coworkers, close neighbors, and of course family members, will probably appreciate knowing what’s going on with him. It’s important to use discernment when deciding who needs to know – and who doesn’t. And thanks to e-mail and texting, we can update people immediately and thoroughly with no need to pick up the phone. That’s truly a bonus, isn’t it? You’re already stressed and emotionally drained by your situation so having to conduct numerous telephone calls and provide the same update to several people would be prohibitive at best.
But with the ease of e-mail comes the temptation to be too thorough in the e-mail missive. You’ve already discerned who needs to be kept updated; now you need to use judgment on how much you say and how you say it. Does your neighbor really need to know about your husband’s incontinence? How would it benefit your mother’s former coworkers to learn that their former Marketing Executive now drools throughout the day and can no longer feed herself? More to the point – ask yourself this question: How would my spouse/parent/partner/sibling/friend feel if they knew I was providing all the gory details of their dementia progression to those near and dear to them? The answer, I believe, is obvious. If they could, your loved one would say, “Please don’t let everyone know what I’ve been reduced to.” Showing respect for your loved one includes protecting her privacy, and thereby her dignity. And I’ll tell you from experience – those on the receiving end of the information would rather you be brief and not overly descriptive.
Celebrate the uniqueness of your loved one.
Your loved one is not just some generic living and breathing person in the Early, Middle or Late stage of Alzheimer’s. He may not be able to do everything he previously could – maybe he’s not even able to speak – but you can still celebrate him as a human being. Everyone mourns what’s been lost; hardly any one celebrates their loved one’s remaining attributes. I learned a lesson from my father during the middle stages of his dementia. I was quick to finish his sentences, or rush him along by answering people’s questions for him. My dad didn’t have to use words to express his displeasure when I did that. He slumped in his chair, looked at me, and let out an exasperated sigh. I stopped right then and there and made no further attempts to rush him as he conversed. Doing so would take away one of the abilities he still had – talking and getting his point across. It may have taken him a long time to complete his thought, but he still had the ability to do so. Please don’t take away the remaining vestiges of your loved one’s independence and abilities. If you feel compelled to feed your loved one just because they take a long time to eat their meal, you’re training them to rely on you for that assistance when they could have been doing it on their own. Who cares if it takes 60 minutes instead of 15 to finish a plate of food? If they’re still able to feed themselves – celebrate that ability. Don’t take it away for your own convenience.
Walk into their reality – don’t force them to enter into yours.
We’ve all experienced conversations with our loved one wherein he or she talks about things that didn’t really happen, although they are convinced that they did. What’s the harm in agreeing with them and going along with their story. Your wife says, “Didn’t you enjoy that trip to the Grand Canyon we took with the kids a few years ago?” O.K. – first of all you don’t have any children, and second of all, you’ve never been to the Grand Canyon. Instead of trying to convince her of what’s real – and making her feel bad/ashamed in the process – talk about the great view, or how all the kids fell asleep in the car and missed the entire gorgeous spectacle. I can guarantee that if you change your paradigm regarding this development, both you and your loved one will be better off. The Alzheimer’s Association has a great adage that they offer us caregivers to help us along the way. If you don’t insist – they can’t resist. I challenge you to go with the flow instead of trying to paddle upstream. Don’t cause contention. A little make-believe goes a long way and harms no one.
AARP magazine reviewed the book Dancing with Rose: Finding Life in the Land of Alzheimer’s by Lauren Kessler. This memoir by Ms. Kessler is portrayed as “an Alzheimer’s tale that’s warm, uplifting, even hopeful – qualities not normally associated with the illness. This odd dichotomy – joy atop a ravaging disease – makes this book a refreshing standout.” Alzheimer’s and other dementia have the ability to peel away a person’s former mask to allow what’s underneath to surface – pleasant or not. What Ms. Kessler learned in her journey with her mother is that “if viewed from a different perspective, Alzheimer’s is not the end of personhood.”
Yes – dementia changes who your loved one is. It oftentimes reduces him or her to childish, and then infantile behavior. But they are still a person. They are no less worthy of your respect and your compassion. This hardest task of your life will end some day. In the interim, may you be merciful to your loved one and may those with whom you are associated support you along the way.
Numerous authority figures are entrusted with your loved one’s care – most of them a fraction of their age. If you can’t be a physical presence for your loved one what will you do to bridge the gap between physical absence and an effective long distance presence?
My father was diagnosed with Alzheimer’s at the age of 84 and died in 2007 at the age of 89. By the time of his diagnosis he had been living in a Continuing Care Retirement Community (CCRC) for seven years. His wife, my mother, died a month before they both were to move to this CCRC located in Oregon state. My mother was truly looking forward to the move with my dad but on September 24, 1994, she was granted the wish that she had thrown into the universe many years earlier – that when her time came, she wanted to die in her sleep. My father still moved to the Oregon CCRC because at the age of 77, he knew he still had a valid reason to move there. Both he and mom didn’t want to be a burden to us three children, so moving into a retirement community that would meet all the needs of his aging body and mind was dad’s gift to us.
A few years after my mother’s death, dad married a resident of the CCRC and they had a wonderful late-in-life marriage. Dad’s wife, Barbara, died from complications of Parkinson’s in 2003 so once again, dad became a widower, but this time his biggest challenge was that he was in the early stages of Alzheimer’s disease. He was still able to live semi-independently in an assisted living apartment at the complex and he was able to perform his activities of daily living (ADLs.) Of us three adult children, the job of being dad’s caregiving team leader quite naturally fell to me. I had worked in the senior care industry for several years so I was quite familiar with caregiving lingo and body frailties, not the least of which was Alzheimer’s and other dementia.
Initially, the miles that separated us wasn’t all that challenging. He was still active, was fully capable of getting himself up in the morning, taking his medications, getting to the dining room, etc. Us children would call dad frequently – and he still had the ability to call us – and we continued our visits throughout the year and although his dementia was obvious to us, we knew he was in good hands and that he was functioning quite well. The staff was very attentive to him and if they had concerns, as his health care representative and financial power of attorney, they kept me abreast of the latest, the greatest, and the ever-increasing not-so-greatest.
The not-so-greatest happened one frightful evening. Dad called me telling me that he felt very agitated and he couldn’t stop walking around his apartment; he couldn’t settle down; he didn’t know what was going on. I asked him if he had recently taken any medication and he replied, “Just some cough syrup.” “How much did you take?” “I don’t know.” So while I had my father on my home phone line, I called the front desk of the facility on my cell phone and told them that my father was having an emergency in apartment #94 and a nurse needed to get there immediately. I kept my dad on the phone and told him that a nurse was on the way to see him and that he would be taken care of very soon. The nurse arrived quickly, and the emergency was averted.
Bottom line? We now knew that dad was no longer capable of managing his own medications. He took way too much cough syrup that evening and it caused his heart to race, resulting in extreme agitation. This precipitating event was the start of his noticeable decline and medication management became the first ADL for which my dad needed assistance.
The above example barely scratches the surface of what many of you are dealing with. Your long distance eyes and ears seem thoroughly ineffective and you’re concerned about your loved one’s well-being. There is hope for the long distance caregiver. It’s not the same as being there, but this hope somewhat bridges the long distance caregiving gap. Part II of this article, published December 4, 2011, addresses some practical steps you can take to help in your caregiving journey.
STATEMENT: Carol’s having a little problem with her memory.
Initially this might be an accurate statement. Two years later, it’s a euphemism that doesn’t benefit anyone, the least of which is Carol.
Imagine denying a person’s cancer diagnosis. There’s no need to treat it. I just have an uncontrolled division of abnormal cells in my body. It’s not that bad. It’s early in the diagnosis anyway and I’m not even experiencing any major symptoms. I’ll do something about it when it really gets bad. Ill-advised, right? Most people would not follow that path. But Alzheimer’s disease, and other dementia, are no less serious. As a matter of fact, cancer isn’t always fatal, but Alzheimer’s is. There is no cure and no potential for one at this time.
Most people would spring into action upon receiving a cancer diagnosis: learning as much as possible about it; taking measures to curtail the cancer’s effects on their lives. The sooner one does something about it, the better the chances of successful treatment. For some reason, when a person receives an Alzheimer’s diagnosis there’s a self-inflicted stigma attached to it; as if the afflicted person brought the condition on themselves. This is an unfortunate perception and one that should be put to rest. Whereas clinical depression or mental illness used to be a taboo subject, those conditions are now more readily accepted in the public eye. Alzheimer’s must be brought out into the open, especially as it affects you or a loved one.
THREE MAJOR REASONS WHY ONE SHOULD ACT ON AN ALZHEIMER’S DIAGNOSIS:
- The window of opportunity to start early drug therapy can be a very narrow one.
The time to seek medical assistance is when symptoms become fairly consistent and more than just a “senior moment.” A thorough medical exam should be conducted to rule out any cause other than dementia. Some medical conditions and/or medication usage can mimic cognitive decline. All the more reason to act early to rule out what might be a readily fixable temporary condition.
If after the thorough medical exam a cognitive workup is warranted, you’ll have a defined cognitive baseline and can start treatments and/or make adjustments in the household that will minimize the disease’s impact on your lives. Now you’re in the driver’s seat, regaining some amount of control over the disease.
- Those close to you need to be informed.
As mentioned in an earlier post, “Caregiving: The Ultimate Team Sport” (article located in the “Caregiving” tab) you can’t assemble a care team if you’re ignoring the needs and challenges facing you and your loved one. You’ll be amazed at the relief you’ll feel knowing that you’re not battling this disease on your own. Let your family and close friends know early on what you need from them. Partner with them to become a formidable force upon which you can rely. You need support and it’s available from several resources.
- Join a local Alzheimer’s Association support group.
The Alzheimer’s Association lists support groups in most geographical regions that should prove extremely helpful to you. Type in your zip code in the “Find Us Anywhere” upper right area of their website and you’ll be connected with the Chapter located nearest to you. Within that local Chapter you’ll then be able to search for a support group by typing in your city, county, or zip code. You’ll find groups for family members who are attempting to support their loved one who has received a dementia diagnosis. You might also find support groups for patients who are in the earliest stages of their illness. Both groups can do much towards providing you with confidence and hope when none can be found. These groups become a practical resource into which you can tap to benefit from others’ experiences in managing the disease. If by chance there is no nearby Alzheimer’s Association Chapter, check with your local hospitals, community colleges, senior centers, and the like as they oftentimes hold groups that are facilitated by trained professionals. These alternative groups are very adequate options when no other groups are available.
If you or a loved one has received an Alzheimer’s/dementia diagnosis, you’ve just entered one of the most difficult chapters of your life. You deserve all the support and medical attention you can get. Ignoring the condition doesn’t make it any less real so please take the steps needed to manage this stage of your life effectively.
The next article in this “Understanding Alzheimer’s & other dementia” series is : “Driving with dementia: the dangers of denial.”
There are diagnostic tools in place that try to make sense of the symptoms of Alzheimer’s and other dementia; some are conclusive, while others are simply an educated guess because knowledge of this disease is evolving day by day in the medical and scientific fields. And for certain, no two people with the disease have the same manifestation thereof.
Whether or not an actual diagnosis is presented, you as family members, or perhaps as the patient, are struggling with this new reality and are attempting to carry on as normally as possible.
In the days ahead I am going to submit four articles addressing some of the challenges inherent with this disease. I am not an expert – I have no PhDs and no medical degrees – but what I do offer is advice gleaned from my own practical experience and from that of those with whom I have been fortunate to be acquainted.
The four articles will be as follows:
- Denial: Roadblock to better health and better care.
- Driving with dementia: the dangers of denial.
- Long distance caregiving (provided in two parts.)
- Preserving your loved one’s dignity.
As Charles Darwin once said: “It is not the strongest of the species that survive, nor the most intelligent. It is the one that is the most adaptable to change.”
I hope that ALL of us will have something to offer as these four articles are presented. I covet your input and hope that you feel free to provide it.
Because of your flexible work schedule, you are the designated driver when it comes to taking Mom and/or Dad to doctor appointments. Well, the older your parents get, the more feeble their bodies, and the more potential for aggravating factors such as cognitive decline. What should have been a 2-hour outing has become an all-day event.
I’m quite certain that many of you reading this article have struggled in your efforts to drive Mom or Dad to their many doctor appointments. Getting Dad into the car is one thing, but getting him out? My goodness – through no fault of his own, he’s forgotten the process and you don’t have the strength to lift him out. With Dad’s cognitive decline, his understanding of what it means to sit or stand on command has decreased. The ol’ “Ally Oop!’ maneuver or the “1-2-3 Stand!” command just won’t work any more. What’s a person to do when you are not able to exert the strength to facilitate such an action on your father’s behalf?
When I visited my father in the long-term care (LTC) facility in which he lived, my goal was to get him out of the facility as frequently as possible. I took him on picnics, on walks around a park’s perimeter, up and down the aisles of a supermarket – anything to provide a change of scenery for him.
As my father’s dementia increased, however, these outings became less and less practicable. I was not blessed with a strong back so my attempts to lift him out of the car or onto a park bench were met with horrendous failure. I grieved the cessation of these activities but I just couldn’t manage my father’s body any more. And not being able to go on these outings really curtailed the enjoyment of our visits together.
Had I lived in the same town as my father, another person could have accompanied me who was capable of assisting with the transfer of my father in and out of the vehicle. Unfortunately, my father lived in Southern Oregon and I live in the Seattle, Washington area so calling upon a friend to go along on these outings was not an option for me. If you, however, live near your loved one, do yourself, and your loved one, a favor by bringing another family member or a friend who has the ability to assist with the mechanics of transporting Dad on outings. Not only will the physical assistance help, but you’ll have someone else with whom to visit when the conversation with Mom or Dad lags due to cognitive decline – or hearing difficulties.
Another benefit of having an additional person with you is that you are introducing your friend to the unavoidable process of aging. This may sound like a negative benefit, but truly, it is not. You will open your friend’s eyes to the future that awaits us all while also providing him with a lesson on how to enhance the life of someone whose world has been drastically reduced in size.
See? It’s a win-win-win situation! You receive the help you need, your parent gets a change of scenery, and your friend learns a valuable lesson.
I want to encourage you to check into local resources that provide suggestions on how to be the best caregiver you can be. For example, your local chapter of the Alzheimer’s Association is a very valuable resource. They have numerous articles within their website and a 24-hour Helpline 1-800-272-3900 to ease you through this process. There’s one thing on which all of us caregivers can agree – we can’t do it all by ourselves. Reach out to receive the assistance that you so richly deserve, and that others are willing to provide.
The heading from an Associated Press story by Matt Sedensky, “Who’s going to take care of our aging population?” should wake ALL of us up; not just us Baby Boomers, but ALL of us because at this stage of our world’s existence, no one has created a magic elixir that cures old age and dying.
Talk to anybody who is in med school, or considering med school, ask them what specialty they would like to focus on and you’ll hear: orthopedics, pediatrics, heart disease, cancer treatment – all worthy fields but I would venture to guess that not one of whom you ask that question has said, Geriatrics or Senior Health. “What about geriatrics?” I ask them. “We’re living longer so you’ll ALWAYS have a job taking care of a civilization that’s fighting to stay alive as long as it can!” They don’t buy it, especially since Geriatricians are one of the lowest paid medical specialties amongst the medical community.
Ugh! Who wants to deal with the wrinkly, saggy, hard-of-hearing, loud complaining geezers among us? Not very many according to the linked article above. According to Mr. Sedensky’s research, there is roughly one Geriatrician for every 2,600 people 75 and older. No wonder people can’t find a doctor who specializes in Senior Health! I facilitate an Alzheimer’s Caregiver support group in my town wherein these family members expound on their frustrating efforts to locate a doctor who: a) will spend the time needed to have a productive appointment with their aging parent; b) who knows enough about elder health issues to suggest a treatment that will provide quality of life for the patient; and c) who has a medical staff that is sufficiently trained to interact with their elderly patients. Unfortunately, the General Practitioner or Internist quite frequently provide the same treatment, and the same method of communicating, to their elderly patients – even those with Alzheimer’s or other dementia – as they do their patients in their 20’s thru 70’s. That just won’t cut it.
Older patients have more complex conditions – and more of them. If a medical professional isn’t accurately trained, he or she might discount an elderly patient’s symptoms as those expected during the normal aging process and therefore offer no effective treatment. “What can you expect at your age Mrs. Jones? Be glad that you’ve lived this long!” I know – that sounds really callous – but I dare say too many elderly patients are treated dismissively, and as a result their quality of life decreases greatly.
Think about it my fellow Baby Boomers. Are you willing to be dismissed just because your doctor doesn’t know what the heck he’s doing? I know that all of us have been to doctors who we’ve “fired” because of their lack of understanding and/or their failure to provide proactive treatment. The vulnerable adults among us might not realize that they have choices. They might not feel confident enough to challenge the highly educated medical professional to whom they have entrusted their lives. Who loses in that equation? We all do. If our aging relatives don’t have appropriate medical care options at this time in their lives, why do we think that there will suddenly be an influx of Geriatricians to treat us when we’re their age?
Maybe this is a lost cause for us but it doesn’t have to be that way for those coming up in the aging ranks behind us. What are your thoughts about this glut of Senior Health professionals? How can we hope to live in a world where quality of life – something we value greatly – is an unreachable, yet much desired goal?
Imagine, if you can, sitting next to your spouse of 25 or more years, and experiencing for the first time that she no longer recognizes you. As a matter of fact, she’s quite scared of you, fearing eventual harm, and backs away, even screaming, because you’ve become a menacing figure in the room. Or your father, who you have diligently visited at the facility several days a week for a couple years; he looks at you with a questioning glare and asks, “Who are you? Why are you here?”
You can’t imagine this scenario unless, of course, it’s happened to you. I’m talking to you, the new-found stranger in your loved one’s life, in the hopes of softening the blow that the above scenarios have landed on you.
Oftentimes during the course of our loved one’s dementia, we’ve managed to find the humor in some of the ongoing episodes, e.g. observing your wife as she stands in front of a mirror, carrying on a one-sided conversation with her new BFF; or your husband’s acceptance of you as a nice lady and all (even though he doesn’t recognize you as his wife), but he tells you he’s not gonna have sex with you because he’s already married; or perhaps you’re admiring the outfit your mother has chosen to wear for the day, only the bra and panties are worn on the outside of her blouse and pants and it’s time to take her to church! Kind of funny, right? But these odd behaviors take on a whole different light when, by their very nature, they cut you off from the loved one with whom you have shared so much history.
I first learned that my father no longer recognized me when I walked into his Oregon hospital room – he had been admitted with an ongoing prostate issue – and after spending a good portion of the day with him, he stood up to shake my hand and said, “Well Jim, it was nice of you to drop by but I have things to do.” Needless to say a) I’m his daughter; and b) my name is Irene. My 89 year old father was five years into his dementia by that time – and as it turned out, only one month away from dying – but the good news is that I had just experienced a really wonderful day with him and I felt very close and in-tune to him.
Did it feel weird for him to call me a name not mine? You betcha – especially since it was a male name – but let’s face it, my hair is pretty darn short so maybe I reminded him of a friend of his and that’s the name that came to him first. Unfortunately, his incorrect identification of me only happened once because the next time I saw him, he was in a coma dying from prostate cancer. What I would have given for many more opportunities to have passed off as his friend Jim. It was not to be.
The loss we experience with non-recognition. I think the biggest loss that is felt by family members is that their loved one no longer shares the same family history. No longer are we able to talk about old times; no longer can we reflect on the road trips, the Holidays, or the day-to-day memories that make a family unique. Nope – we’re on our own and even if we have other siblings with whom to share these stories, it’s just not the same. Imagine being the only child and your last remaining parent no longer has the ability to be a part of the stories and histories that keep your legacy alive. That’s a difficult pill to swallow to be sure. There are no amount of condolences, hugs, and “I’m so sorries,” that will take away this very real pain.
I think the only gift I have to offer those experiencing this scenario is to say that only YOU can provide the love that your father/mother/spouse/sibling can receive. A caregiver can’t take your place; a well-intentioned volunteer can’t take your place. Only you can transmit the familial love that will make a difference in your loved one’s life.
Whether your name is Jim, or sweetie, or heh-you: please know that you hold the only genuine love that can make a difference in your loved one’s life. If you can believe that – your visits might be a little less painful when you’re no longer the acknowledged spouse, adult child, or sibling of your loved one.