The unpredictability of Alzheimer’s.
The link above is a blog entry by a delightful woman who is taking care of her husband. Being a caregiver of someone with Alzheimer’s or other dementia is challenging in so many ways but this blogger truly knows how to find the silver lining in her experience as a spousal caregiver.
“Curtain #1 beautifully portrays a day’s challenge as an adventure, not unlike the game show Let’s Make a Deal. You never know what will be behind the curtain – a prize, or a zonk – but this wife’s way of looking at each experience is very refreshing. I don’t think I would handle the circumstances nearly as well as she does. I hope she knows that having a bad day, and one with less-than-perfect attitudes, is more than o.k. because we’re only human, after all. Until we reach perfection, we’ll just have to do the best that we can with what we’ve been given.
I think she’s doing just fine.
Crenezumab: a drug that might prevent Alzheimer’s.
In a NY Times piece, Testing a Drug that may stop Alzheimer’s Before it Starts, it was announced that a drug, Crenezumab, is set to be tested early next year on families who carry the single genetic mutation for Alzheimer’s – people who are genetically guaranteed to suffer from the disease years from now but who do not yet have any symptoms. Most of the 300 participants for this study will come from one extended family of 5,000 members in Medellin, Columbia who have been horrifically affected by this disease throughout their extended family.
This Colombian family’s story is presented in an astonishing video within the article’s link above. For decades, these family members started showing Alzheimer’s symptoms in their mid-40’s and the progression was so rapid that they advanced to full-blown dementia by the age of 51. The effects on a society, and a family’s dynamics, is eye opening to say the least. Let’s face it, in this video when a Colombian pre-teen is shown feeding his father, the role reversal is unmistakable.
The Study’s 300 family member participants will be years away from developing symptoms – with some being treated as young as 30 years old – but the hope is that if this drug forestalls memory or cognitive problems, plaque formation, and other brain deterioration, scientists will have discovered that delay or prevention is possible.
This drug trial has a long road ahead of it, but the study will be one of only a very few ever conducted to test prevention treatments for any genetically predestined disease. In an Alzheimer’s world where very little good news is forthcoming, it’s nice to see even a slight glimmer of hope.
Lighten up Mondays
At a wedding reception, a priest and a rabbi met at the buffet table.
“Go ahead,” said the priest, try one of these delicious ham sandwiches.
“Overlooking your divine rule just this once won’t do you any harm,” added the priest.
“That I will do, dear sir,” replied the Rabbi,
“on the day of your wedding!”
Is Alzheimer’s a death sentence?
My Thoughts Right Now, May 11 Alzheimers Reading Room.
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.
How to Break the News When It’s Alzheimer’s
How to Break the News When It’s Alzheimer’s.
It’s so unfortunate that Alzheimer’s, and other dementia, have become the new condition to avoid and/or not acknowledge. A dementia diagnosis is SO difficult for everyone – including the one with the disease. I think this article is very well done and provides a perspective of which many need to be aware. Dismissing, or using euphemisms for this disease e.g., my wife has some memory problems – won’t make it go away. Helping others to understand – not necessarily accept – this diagnosis is a very worthwhile endeavor.
When Illness makes a Spouse a Stranger
A very moving story in the New York Times, When Illness makes a Spouse a Stranger, provides a moving testament, contained in an article and a video, of the commitment required when a spouse becomes a stranger.
When Michael French was diagnosed with frontotemporal dementia, his wife Ruth was told that the best way to describe this type of dementia is that the brain atrophies. This dementia is not like Alzheimer’s, the most common form of dementia. Frontotemporal dementia strikes younger people and progresses much faster than other dementia.
How does one continue to have a relationship with someone who has become a complete stranger, especially one’s spouse? Ruth says that what is left in their relationship is love – that’s all – and that’s enough for her right now.
This story, and the accompanying video, are very moving and somewhat intense, but very much worth viewing.
Lighten Up Mondays
This will be a weekly feature that will provide just what all of us need on one of the most dreaded days of the week: MONDAY!
Marooned on a South Seas island, a man with a beard down to his knees is walking on the beach. Suddenly a beautiful woman emerges from the surf.
“Been here long?” she asks. “Since 1981,” he replies.
“How long has it been since you’ve had a cigarette?” “Eleven years.”
She unzips a pocket in the sleeve of her wet suit, pulls out a pack of Camels, lights one, and hands it to him. He inhales greedily.
“How long since you’ve had a drink of whiskey?” “Eleven years.”
She unzips the other sleeve and offers him a flask. He takes a long pull and looks at her adoringly.
“How long,” she asks coyly, “since you played around?” “Eleven years, ” he says wistfully.
She starts to unzip the front of her wet suit. “Gosh,” he says, “you got a set of golf clubs in there?”
Communication Tips from Individuals with Memory Loss Alzheimers Reading Room
Communication Tips from Individuals with Memory Loss Alzheimers Reading Room.
It’s not often that we have the privilege of hearing from someone who has dementia, providing us who don’t have dementia, with some caregiving tips. Please take the time to listen to this person’s voice.
Alzheimer\’s Reading Room: Learning How to Use Alzheimer\’s World to Your Advantage
Alzheimer\’s Reading Room: Learning How to Use Alzheimer\’s World to Your Advantage. Please check out this link, as well as those that I offer in my commentary below.
The above link provides a great article about a woman caregiver who found success using the confusion of Alzheimer’s to her advantage. (For background information on the people referred to in that link please look at an article about a talking parrot who in essence was the Assistant Caregiver for Dotty, a delightful woman with Alzheimer’s.)
The Alzheimer’s Reading Room article posted at the top of this page mirrors my own thoughts as provided in my article: Honesty is NOT always the best policy. If you’ve never been faced with the communication struggles associated with caring for someone with Alzheimer’s or other dementia then you may be unnerved by the approaches offered in my article and the article linked at the top of this page. If you have been faced with those struggles, however, you’ll probably support any communication methods that make your caregiving job easier. The caregiver benefits, and the one being cared for receives the outcome of those benefits.
BOTTOM LINE: It’s all about entering the world of the person with Alzheimer’s, rather than trying to force them into yours.
Alzheimer\’s Reading Room: \
This article is a delight to read. It describes one family member’s perception of having been “chosen” to be the caregiver for his grandmother. As a result of that choice, he developed a product that can be, and is, used widely in assisted living and dementia care units. What a terrific outcome for everyone!
Blogger Awards for You and Me!
Thank you “Let’s Talk About Family” fellow-blogger for nominating me for the Versatile Blogger Award. That’s the kind of feedback I like! More importantly, everyone should check out her Blog because her insights into the ups, and downs, of caring for parents is very insightful and well worth following.
I have been so blessed by the input I receive from the many Blogs that I follow. I’m going to use this opportunity to make some nominations as well! (I could list many, many more, but to begin with at least, I’ll list just a few that always stand out to me.) First of all the steps that the nominees need to take to award others who are worthy of singling out:
- Thank the person who nominated you for an award;
- Copy & paste the award logos in your blog, as well as in the sections devoted to your nominations, below;
- Be certain to link the person who nominated you for an award; in my case, you’ll see that I’ve linked “Let’s Talk About Family” when I thanked her for nominating me;
- Nominate your own choices for awards;
- Place links to their Blogsites so that others can view their fine work;
- Say a few things about yourself so that others understand a bit more as to where you’re coming from – and where you’re going:
- My first name is Irene and I live in the Seattle, Washington area.
- I’m a Baby Boomer who loves to share knowledge about the challenges, and delights, of being in this age group.
- My working background of the past 20 years includes being a paralegal in law firms as well as for corporations; an Executive Assistant and Office Manager for a senior housing company; a Business Manager in an assisted living/dementia care facility; an Alzheimer’s Association caregiver support group facilitator; and a certified long-term care (LTC) ombudsman for the county in which I live.
- I became a LTC ombudsman in 2008, thereby leaving the senior housing industry, because in my mind one can never do enough for the vulnerable adults who live in long-term care residential facilities. In order to assure that vulnerable residents experience a dignified existence and a high quality of life, I had to switch sides and become their advocate.
- I will always try to write something about which I am familiar and that I have also experienced. I’m not an expert, but my goal is to always provide input that I hope will prove valuable to others.
- My mother died in 1994 and from 2004 thru 2007 I was the primary long-distance caregiver for my father who lived in an assisted living community’s dementia care unit.
Now onto the award nominations!
Versatile Blogger Awards:
Day by Day with the Big Terrible A (Alzheimer’s, of course.) This blog is very reader-friendly. This blogger is a wife who is taking care of her husband. Her mini-entries very clearly reflect the struggles she, her husband, and her family face but she also makes room to celebrate the little victories that sometimes are hidden within the caregiving struggle. I think all of us can find comfort in this woman’s efforts, and her ability to describe those efforts deserve 5 Stars!!!
My Simple C.com. This blog is an online community that seeks to connect professional caregivers with family caregivers. The resources and suggestions are quite good and are provided without the intent of selling anything. Virginia Lynn Rudder works for a company called Simple C, but she clearly has a goal of providing information in an easy to read, comprehensive, and supportive manner.
Elder Advocates. Lark E. Kirkwood experienced something that no one should ever have to experience. A guardianship was put in place limiting access to her father who was suffering from Alzheimer’s disease, and who has subsequently passed on. Please visit her site because she provides many valuable resources relating to a prevailing problem for vulnerable adults: elder abuse & fraud.
BEAUTIFUL BLOGGER AWARD.
Flickr Comments by FrizzText. This Blogger really knows how to take a photo and knows how to find them so that we can take a break in our very busy days and simply enjoy his view on our world. Please make a point of stopping by and you’ll be representing one of the more than 100 countries that partake of his Blog site.
Baby Boomer + Aging Parent = a changing paradigm.
Planning for a wedding? FUN!!!!!
Putting together an extended vacation to a tropical paradise? EXHILARATING!
Figuring out how to help mom and dad with their increasing care needs? UNEXPECTED!
A recent National Public Radio (NPR) Story: Preparing for a Future that includes Aging Parents addresses the unexpected, and the unplanned for. Whether because we’re kidding ourselves or we really believe it, we oftentimes can’t imagine our parents as anything but the energetic, robust, independent mom and dad with whom we grew up. And if we don’t live near them, we’re falsely sheltered in our assumption that mom and dad are doing just fine; at least they were the last time we saw them during the Holidays! If we’re honest with ourselves, however, we’ll admit that our infrequent visits with the parents shock us greatly as we notice a bit of feebleness in their manner, because as the above story states, “time does what it does.”
Surprisingly, only 13% of some 4,000 U.S. workers surveyed for the 2011 Aflac WorkForces Report considered that the need for long-term care would affect their household. We love to live blissfully ignorant, don’t we? We have so many of our own stresses and pressures associated with running our family household, we’re just not going to entertain having to be on-point with our parents’ needs as well. Guilty!
I became a long-distance caregiver in the Seattle, Washington area for my father who lived in an all-inclusive facility called a Continuing Care Retirement Community (CCRC) in Southern Oregon. The first eight years he lived there were worry free because my father was one of those robust parents who was on the path towards living to a ripe old age. He did live to a ripe old age, dying at the age of 89, but from the age of 84 until his death, Alzheimer’s invaded our family’s peaceful existence, and I found that even as a long-distance caregiver, I was on-point 24/7.
Caveat: my parents had purchased long-term care (LTC) insurance so none of us three offspring were financially responsible for my father’s care. But anyone who has been a caregiver for a loved one knows that care isn’t always equated to monetary expenditure. In my case, the constant need to travel to Southern Oregon to monitor his care and be the designated (self-designated) sibling best equipped to coordinate his care with the facility’s staff, lead to my decision to temporarily leave my career, which was, coincidentally, one in the long-term care housing industry. By the way – the answer was not to move him up to the Seattle area. His financial investment in this CCRC up to that point rendered that an untenable option.
Even though I absolutely relished this opportunity to give back to my father – and I truly did – it was very difficult on my household and me. My health temporarily suffered. Everything I did revolved around being available for my father and hopping on a plane at a moment’s notice. I lived in a five year period of dreading the ringing of my home phone or mobile phone because it most likely meant that something needed tending. And getting home and finding NO voicemails in our phone system was cause for celebration.
But enough about me.
Are you prepared for the eventuality of attending to your parents’ care or are you already on that journey?
Or maybe you are already caring for a spouse with medical or cognitive needs. How are you managing that difficult task?
Let us hear from you. Not talking about it won’t make it go away. It’s time to face the piper and be as prepared as we can for the inevitable.
Grief and Alzheimer’s — Anguish Over Multiple Losses : Huffingtonpost.com
Grief and Alzheimer’s — Anguish Over Multiple Losses : Huffingtonpost.com.
An excellent article on ambiguous loss suffered by those who have a loved one with Alzheimer’s or other dementia. This is a loss that occurs in many stages and is no less traumatic than what one experiences with an unexpected, unanticipated loss. Perhaps such a loss is even more devastating.
What are your thoughts on this matter?
Communicating in Alzheimer\’s World | Alzheimer\’s Reading Room
Communicating in Alzheimer\’s World | Alzheimer\’s Reading Room.
One of the most frequent stresses I hear from those caring for a loved one with Alzheimer’s or other dementia is having to REPEATEDLY answer questions for which an answer has been given – numerous times. This article provides some tips on communicating with someone who is literally not on the same wavelength as you.
Adjustment disorder: a long-term care facility side-effect.
Think of a moving/relocating experience you’ve had with all of its inherent tasks of purging of items, packing what remains, and leaving all that is familiar as you move into uncharted territory. In your new neighborhood you’re starting all over again to find: new friends; a new supermarket with the best deals; perhaps the best school(s) for your children; a new church; and new ties to the community. Not exactly an enjoyable experience. It took you some time to adjust to your new community and feel that you fit in, didn’t it?
Now imagine doing the same thing as someone who is at least 70 years old with failing health, no family nearby, and perhaps with a compromised cognition level. Vulnerable adults move into a long-term care (LTC) housing environment because of a condition, or combination of conditions, that make living independently no longer an option. Because of this disruptive move, another disorder – adjustment disorder – makes their move a perilous one.
A loss of context in a new environment. In my work as an advocate for vulnerable adults, I had the privilege of hearing a wonderful speaker, George Dicks. At the time, Mr. Dicks supervised the Geriatric Psychiatry Service clinic at Harborview Medical Center in Seattle, WA. He was also a contracted instructor for the University of Washington, teaching courses on Gerontology, Psychiatric Consultation, and Mental Health. He emphasized that residents living in nursing homes and assisted living facilities struggle to look for context within their new environment. For example, context is hard to come by when your daily bath occurs at 2:00 in the afternoon instead of in the morning or evening as was the case prior to the move. And forget about finding comfort in routine because the demands on LTC staff are such that caring for numerous residents on their shift can’t possibly assure a routine on which the residents can rely.
Just providing care doesn’t mean that a staff person is caring. Everyone who moves into a long-term care facility will have difficulties, but those who are cognitively impaired face an especially arduous adjustment. As I previously mentioned, staff are hard pressed to provide individual care to their residents, and oftentimes are poorly prepared to handle the disorders that walk through the door. Just getting through their daily shift is troublesome so trying to learn the habits and routines that are so vital for quality of life of the resident with dementia is a very time-consuming task.
Quite frequently, the only contact a staff person has with a resident is when they are making demands of that resident: “time to take your medicines Mrs. Jones;” “let’s get that soiled clothing changed Mr. Smith;” “open your mouth Mrs. Clark so I can feed you.” Providing for basic needs is not providing care. Why? Because the staff are requiring something of the resident. There is no connection. When a staff person interacts with a resident, absent a provision of care, that’s a better definition of care.
How to lessen the effects of adjustment disorder. Those living in a long-term care housing situation oftentimes feel as though they left all their power, and all of their basic human rights, at the door. They are constantly surrounded with reminders of their condition – all those other residents who look as lost and helpless as they do – and it seems that the only time anyone pays attention to them is when someone is demanding something of them in the form of providing some sort of assistance with their care needs. If every staff person spent just five minutes of non-task-oriented time with each resident during their shift, those residents just might start feeling better about themselves.
- Walk with a resident for a few minutes by simply accompanying them in the hallway and reassuring them along the way.
- Play music the residents like in the common areas and in their rooms – and don’t assume that you know what they like to hear. Take the time to find out what gets their feet tapping.
- When you walk past a resident, greet them, smile at them, just as you would if you were in a social environment instead of a clinical environment. Again, do so even when you’re not providing a care service. Your friendly, heart-felt greeting may just make their day.
- Start a dialogue with residents that allows them to open up to you about who they are; what their lives were like prior to arriving at the facility. If you need to jot down some of their stories so you’ll remember them later, do so and continue the dialogue the next time you see them. Wouldn’t it be a pleasant surprise to a resident when you asked them, “Tell me more about your grandson Charlie. He seems like a real character!” Wow – you were actually listening, and it shows. Now you’re connecting with the resident.
If you are a staff person in a long-term care facility, can you put your grandma or grandpa’s face on your patients/residents faces thereby having a greater incentive to connect with those receiving your care? Or if that doesn’t work for you, do what you must in order to add an element of care to those you serve. Just because you’re helping the resident perform a task, doesn’t mean that you’re providing the care that they really need.
Music therapy: a key to unlocking the diseased brain.
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.
Cost of Dying: planning for a good death, from advance directive to talking with your family
Cost of Dying: planning for a good death, from advance directive to talking with your family.
The article posted here is well worth the read. It is very comprehensive and reveals the nitty gritty of the decisions that are so important, and too often emergent, as we and/or our family members age.
When my husband and I set up our living wills/advance health care directives a few years ago, we did so as a living gift to each other. The attached article reflects that sentiment as well. With all of the details spelled out in advance, the surviving loved one is not thrust into an emergent decision that by its very nature holds one of the biggest responsibilities we can carry on our shoulders. To be sure, an advanced health care directive doesn’t take away all of the end-of-life challenges that occur but it does allow the surviving family members to feel at ease as they respect their loved one’s wishes that were expressly made known well in advance of the need for implementation.
Having these discussions with loved ones can be uncomfortable for some, but if framed in the guise of being a living gift to those left behind, the discussions take on a whole new meaning and can’t help but come out in a positive light.
Caregiving as a Baby Boomer – Joan Lunden’s experience.
Caregiving is not for wimps as is evident in a recent CNN article, “Caring for loved ones the ‘new normal’ for boomers.” This article highlights the challenges that former “Good Morning America” host, Joan Lunden, faced when helping her mother transition into a long-term care (LTC) housing facility. Even with all the resources at her fingertips, it took three LTC housing moves before Ms. Lunden found the one best-suited for her 88-year-old mother.
My article, “Selecting a Senior housing community – easy for some, not for the rest of us,” addresses the challenges inherent with even beginning ones search for senior housing. Just like everything that is new to our experience, there are an entirely new set of vocabulary terms associated with long-term care housing so it helps to understand those terms prior to starting off on your journey.
Additionally, the article “Avoiding the pitfalls of selecting senior housing” addresses the ways in which you can discern whether or not the housing community you’re considering has had any run-ins with licensing, the Department of Social Services, and the like. You will be pleased to know how easy it is to check up on the facilities you’re considering just by making a few phonecalls or perusing websites that provide vital information to consumers about incidents that might have been investigated at the facilities. No one needs to go into this task blindfolded and uninformed. The better informed you are, the better the chance of success in choosing the most appropriate senior residential situation for you or your loved one.
What has been your experience as someone looking for long-term care housing options? Certainly all of us can benefit from the experiences of others just like yourself so I hope to hear from you in the form of blog comments soon!
Where do you find peace?
Do you find peace within the circle of your family; or does meditation or prayer, an inspirational book, or music fill your soul? Wherever the source – how do you keep that peace from slipping away?
Certainly when we’re exposed to sorrowful or earth-shattering news, any semblance of peace and calm seem to disappear, such as: acts of terrorism – both domestic and abroad; heartless school shootings; bigotry and hatred; and even devastating illness. How many times has your armor been pierced by such circumstances?
Too many to count. So how do we find peace amongst the chaos?
We can find peace in many small ways – probably the easiest way to do so is to acknowledge the beauty that surrounds us. It doesn’t matter whether you’re a creationist or an evolutionist, the beauty you see is the same. It’s always refreshing when I walk through my local plant nursery, Molbaks, to see the intricacies of flowers and their natural, yet seemingly unrealistic, colors. How did that happen? How can so much detail just happen and we had nothing to do with it? I relish the peace I feel when roaming the rows and rows of flowers and I capture that moment and take it home with me.
And the colors of sunrises and sunsets – what a joy to behold! Even though my house is located in such a way as to not be able to directly see the sun’s rising and setting, I still have the privilege of seeing its aftereffects in the pink and ruby colors of the sky. My mother’s favorite color was pink, so when the sky is beautifully colored in that tint, I credit my mother for this natural artwork, somehow executed from her heavenly resting place.
Celebrating even the smallest of victories in one’s life. Time and again I remind myself to acknowledge the small goodnesses and victories in my life. I learned this practice shortly after having a fairly major orthopedic surgery several years ago. The recovery and rehabilitation were lengthy so I had to take comfort in even the smallest signs of improvement so that discouragement didn’t creep in to rob me of the positive steps I had made towards recovery.
So too is it important to pay attention to all the emotional windfalls that come our way. A huge lottery windfall – such as recently happened (December 2013) in California and Georgia – isn’t the type of emotional windfall I’m talking about. We can experience far more authentic emotions that are not tied to money or things. Someone greets me with a smile or has a word of encouragement that I absolutely needed at that moment? That feeds my soul. I greet someone else with a smile and a hug? Even better – now I’m paying it forward! It’s been said many times before that the richest and longest lasting gifts are those that don’t cost a cent. As trite as it may sound, it’s still absolutely true.
Where or how does one find peace when hit with a wall of hurt – whatever that hurt may look like? In my experience, I have to force myself to look away from the hurt/pain/stress/negativity in order to clearly see some peaceful element, regardless of how small, that will convince me that all is not lost, because I still have this, whatever “this” may be. When we consciously turn away from the wall of hurt, we then have the ability to find some element of peace, somewhere, in our purview. That doesn’t mean that we ignore what is required to resolve the hurt that came our way, but we make a conscious decision to redirect our focus elsewhere so that all the focus isn’t on the hurtful things that have come our way.
Dona Nobis Pacem. I really like this blog entry entitled, Dona Nobis Pacem, from a blog written by Kathy that focuses on her quest to find peace after the death of her mom to pancreatic cancer. To be sure – finding peace is a journey, it’s not just a decision one makes – and Kathy’s article addresses the work required to attain peace. But initially she had to make a decision to simply start on that peace-finding journey, and doing so, she’s nearing her quest. I hope you will visit Kathy’s site and take the time to also watch the video she attached that highlights the song Dona Nobis Pacem – Give Us Peace.
Retirement communities: the good and the bad.
In the April 2012 issue of the AARP Bulletin, two articles caught my eye. The first article, “To be a Bride Again at 100” (attached is the video link) celebrates the marriage of Dana Jackson, 100 years old, to her groom, 87 year old Bill Stauss. This is a love story between two residents of a nursing home in Bowling Green, Kentucky. This nursing home celebrated their love, and their death-do-us-part vows, in such a lovely way. The management and staff of the nursing home exhibited a wonderful sense of community and support of Dana and Bill. Whether they realized it or not, the staff at the Rosewood Health Care Center helped the newlyweds exercise their rights as long-term care residents.
The second article in the Bulletin’s column, What an Outrage, “Barred from a fine dining restaurant,” shines a spotlight on a Virginia retirement community that not only did not exhibit a sense of community and support, but they quite literally violated the rights of a husband and wife living there. When the husband’s care needs required him to switch to the skilled nursing care portion of the retirement community, while his wife remained in the independent living portion of the community, their meals together were abruptly stopped. The wife could continue to dine in the fine-dining restaurant of the retirement community, but her husband was barred from doing so. He and the other sixteen nursing care and assisted living residents were required to eat in their own separate dining room.
Harbor’s Edge retirement community had a couple non-fatal choking incidents involving three of its nursing care and assisted living residents in 2011 so a new rule was put in place segregating the more inform from the less infirm, even going so far as to ban the more infirm residents from attending events where food was served. Keep in mind, residents in this retirement community make a sizable deposit to live there, to the tune of a half million dollars, PLUS a $5000 monthly fee. I guess money doesn’t buy happiness but it sure should have bought these residents the right to eat where they pleased!
The outcome: the Virginia Department of Health was contacted and soon thereafter, the ban was lifted. In Washington State, laws are in place to protect the residents of long-term care (LTC) facilities so that these residents can experience a dignified quality of life. Vulnerable adult residents are guaranteed specific rights by law. Revised Code of Washington )RCW) 70.129.020 Exercise of Rights, says in a nutshell that a resident has a right to a dignified existence, self-determination, and communication with and access to persons and services inside and outside the facility…The resident has a right to be free of interference, coercion, discrimination and reprisal from the facility in exercising his or her rights. The remainder of RCW 70.129 further details all the civil & resident rights afforded vulnerable adults in the State of Washington. If in your experience you suspect that someone’s long-term care resident rights are being violated, please contact the long-term care ombudsman program in your state by visiting the attached weblink for the National Long-Term Care Ombudsman Resource Center.
What great, and not so great, experiences have you had relative to long-term care residential living? I would love to hear from you so we can celebrate the good, and expose the bad, for all of our benefit.
Alzheimers Test, the Alzheimers Questionnaire Alzheimers Reading Room
Alzheimers Test, the Alzheimers Questionnaire Alzheimers Reading Room.
No test for Alzheimer’s disease is fool proof and I would venture to say that ALL tests of this nature aren’t black & white. There are many gray areas when attempting to discern the presence of Alzheimer’s or other dementia in its earlier stages but as is often said, knowledge is power and certainly some information and guidance is better than none. I hope the article linked here will prove helpful to you.
Where do you seek happiness?
I came across a quote the other day from Marie Mountain Clark, one of an elite group of women who completed U.S. Air Force pilot training in the 1930’s. Ms. Clark died in 2008 at the age of 93.
“It is natural for a person to seek happiness in life; however, I believe that this desirable aim is never achieved if one attempts to find it directly. Instead, happiness is found indirectly as a by-product from devoted service to the lives of others.”
Thank you, Marie, for words by which to live.
Whether you’re in your 20’s, 50’s, or 80’s, life is too short. We absolutely have no guarantee of the next minute, month, or year. Why occupy what time we have, regardless of how long it might end up being, with tasks that provide no assistive value to others? Does this mean that we all quit our jobs and start a life that rivals Mother Teresa of Calcutta? Not by any means. What it does mean, however, is that in the hours that we’ve been given, let’s make as many of those count. A very wise man once said, “Do all that you can, in all the places you can, in all the ways that you can, at all the times you can, to all the people you can, for as long as you can.” – John Wesley
Define your passion; follow your heart; and make a difference in someone’s life. If your eyes and ears are open, you’ll know what that is.
$656M Mega Million lottery woes.
Woe is me.
Woe is you.
Our lotto tickets failed to win.
So now it’s time for a joke or two.
Talented talking dog. An agent arranged an audition with a TV producer for his client, a talking dog that told jokes and sang songs. The amazed producer was about to sign a contract when suddenly a much larger dog burst into the room, grabbed the talking pooch by the neck and bounded back out.
“What happened?” demanded the producer. “That’s his mother,” said the agent. “She wanted him to be a doctor.”
Expensive cat exam. Mrs. Klapisch brought her cat to the veterinarian. The doctor had her hold the animal on the examining table as he touched and gently squeezed it. He then walked slowly around the table, all the while looking back and forth, back and forth. When he was done, he gave out some medication and presented Mrs. Klapisch with the bill.
“What?” she cried. “One hundred fifty dollars for two pills?” “Not just for pills,” said the vet. “I gave her a cat scan too.”
Literary dog. A man went to the movies and was surprised to find a woman with a big collie sitting in front of him. Even more amazing was the fact that the dog always laughed in the right places through the comedy.
“Excuse me,” the man said to the woman, “but I think it’s astounding that your dog enjoys the movie so much.” “I’m surprised myself, “she replied. “He hated the book.”
Randy cat. Kerry the tomcat was scampering all over the neighborhood – down alleys, up fire escapes, into cellars. A disturbed neighbor knocked on the owner’s door and said, “Your cat is rushing about like mad!”
“I know,” the man conceded. “Kerry’s just been neutered, and he’s running around canceling engagements.”
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.
Creating the next chapter of your life.
Do you seek new direction in your life?
Are you in the process of recreating yourself?
Well I’ve learned that it’s easier to know which direction you should go if you’re already in motion.
The world may have been created in a week, or zillions of weeks; either way, a lot of energy went into that creation and the world-in-process was not a stagnant one.
Trial and error. I constantly look for ways to improve myself and increase my effect upon the community around me. If I’m not contributing to a cause – regardless of how big or small – I figure, “Why bother?” But if I wait around for some sort of change to occur, I’m going about it in the wrong way and believe me, I’ve experienced enough trial and error to write a book on the subject. The trial and error approach works, however, if a person becomes well-informed and doesn’t take financial or personal risks that they can’t afford. After all, sometimes we need to discover what doesn’t work for us in order to find out what does work for us.
Living or playing to your strengths. My Baby Boomer direction was greatly influenced by Marcus Buckingham, one of the world’s authorities on employee productivity. (By the way, his DVD series Trombone Player Wanted, is worth looking into.) He suggests that to make your greatest contribution, it’s best to play to your strengths most of the time. I have taken to heart Mr. Buckingham’s strong caution against veering off ones strengths path. After all, when I’m creating a new me, why would I choose to do the lame-o, same-o with all its inherent dissatisfaction? That’s like doing the same thing over and over again and expecting different results. That sure hasn’t worked for me. In addition to playing to my strengths, I also play to my passions. As a Baby Boomer creating my life’s next chapter, it makes sense to deliberately avoid activities that drag me down and weaken me and run to those activities for which I am most impassioned and inspired.
Find your niche and go for it. I know what I like to do and what I’m good at so I try to consciously remain open to opportunities that directly relate to those strengths. I thoroughly enjoy working with an older population of adults but I know what part of that experience I’m able to do, and what I’m not able to do. For example, I know my limits on “clinical atmosphere” so any involvement with older adults excludes my participation in a nursing home or hospital environment. But throw me in the midst of adults living in assisted living or dementia residential settings and I will make new friends of everyone with whom I come in contact. Add to that my enjoyment and effectiveness as a public speaker, I look for every opportunity in which to use those abilities. As a Certified Long-Term Care (LTC) Ombudsman, I have the privilege of meeting with and advocating for residents in LTC settings. Additionally, I provide resident rights presentations at those facilities and at non-facility venues such as senior centers and city forums. It’s the best of both worlds for me – interaction with my target audience and feeding my passion for public speaking.
Recognizing an open door when you see one. On a recent Oprah’s Next Chapter episode, Oprah Winfrey interviewed Lady Gaga and at one point asked the singer how she came up with new song or album ideas. This is the gist of what Lady Gaga said: she imagines herself in a hallway, there are doors all along the hallway but she knows there’s another door coming up further down the hallway that is more appropriate but it’s not readily visible. Through trial and error she eventually finds the correct door/song inspiration. How does she know that’s the door through which she is to walk? When the door finally opens, the light floods in, she is able to block out all distracting noises, and her wishes and thoughts rise to the surface as a basis for her next song/album creation. I’ve opened some wrong doors in my life as a result of incorrectly thinking that just because a door opens, that means I’m supposed to walk through it. Again, trial and error comes into play and discernment takes a front row seat.
Not every door that opens is going to be the correct one. When I’m in exploratory mode, I have to be very careful not to walk through the first door of opportunity that comes my way – regardless of how enticing. When I make this mistake, I quickly discover that I’ve committed myself to the wrong project and have had to withdraw myself shortly thereafter. I didn’t look before I leaped – not a safe, or advisable practice to be sure. It’s worth me taking the time to weigh my options; write a list of Pros and Cons; ask trusted individuals for their input; and then make an informed decision. If it’s right for me, it’ll wait for me. If this new opportunity allows me to play to my strengths and my passions, everyone benefits and there are few, if any, casualties along the way.
What does the next chapter of your life look like? How are you going about writing that chapter? I’d love to hear from you because I’m pretty sure I have quite a few more chapters of my own to write.
Dotty Colors, On Her Own!
This article from the Alzheimer’s Reading Room brings hope and promise surrounding a disease that usually holds nothing but heartache. As an Alzheimer’s caregiver support group facilitator, I have heard a similar story about one of the support group member’s sister who, seemingly lost in her cognitive decline, is able to paint and do so beautifully – “drawing” on her pre-dementia passion for the Arts.
What are YOUR Lack-Of-Customer-Service Pet Peeves?
Here are just a couple of mine.
Today I experienced the inevitable straw that broke the camel’s back regarding poor customer service that inspired me to write this article which, I warn you, will be full of complaints and negative energy.
I’ll start off with the incident that inspired the diatribe you’re about to read:
Grocery check-out lines. Purchased my weekly dose of grocery items today – a mere $225 worth. From the start of the transaction to its bitter end, the checker didn’t utter one word. No baggers were in sight so I started to bag my own groceries, even though there were two employees standing five feet from me at the self-checkout area with nothing to do other than to watch this Baby Boomer bag her own groceries. (Bagging groceries by employees is still a common practice at most supermarkets in Washington State, including this one.) The transaction ended with the checker putting a couple remaining items into a bag, handing the receipt to me, logging off his register, and walking away. Mind you, all my grocery bags still remained on the checkstand counter, leaving me no option but to personally place them in my grocery cart. I feel a letter to the manager forming in my brain – not the first letter I’ve written to grocery store managers.
Assembly line doctor visits. I’m convinced that doctors are required to meet a certain patient quota per day – at least my doctor is. The last few times I’ve visited her, she’s rushed me through the visit, even going so far as to do the following: 1) using a hand gesture to hurry me up – picture her hand going in horizontal circles in front of her while I’m trying to explain my reason for the visit; and 2) two weeks after major spine surgery this same doctor expressing her impatience by saying, “Hurry Irene, this appointment needs to end!” Sorry to have messed up your day, doc! How callous of me for talking to you about my horrific and painful surgery experience!
A surgeon’s god-complex. I just have to mention the aforementioned surgery experience. A neurosurgeon operated on me a year ago to perform an anterior cervical spine disc replacement and vertebral fusion: a four hour surgery, one night in ICU, a full year of recovery. At my two-month post-surgery appointment with this god-surgeon, I explained how difficult it had been going through such a drastic surgical experience. His comment, and I quote, “It wasn’t that drastic of a surgery.” Ahem. My comment, and I quote, “It may have been the 5000th cervical spine surgery you’ve attended but it was my first!” Imagine him minimizing my surgery, thereby dismissing my discomfort and recovery experience?! Grrrrrr.
Before my blood pressure rises to unsafe levels – which would take a lot because my normal BP is 96/65 – I’ll stop right here to let you vent about YOUR frustrating lack-of-customer-service experiences.
Start your retirement – start your job as a family caregiver.
You’ve worked your entire life; you’ve lined up your retirement leisure activities; you’re ready to start the first day of the rest of your life, but instead you start a new job: caregiver to your sibling, spouse, parent, or other family member.
Or perhaps you retired early to take on your caregiver job because there was no way you could do it all: continue your full-time job while moonlighting as your loved one’s caregiver. It doesn’t work or it only works until the caregiver runs out of steam. One way or another, your retirement years sure don’t resemble what you envisioned.
The CNN article, As baby boomers retire, a focus on caregivers, paints a frightening picture but one that is painfully accurate. The highlighted caregiver, Felicia Hudson, said she takes comfort in the following sentiment:
Circumstances do not cause anger, nervousness, worry or depression; it is how we handle situations that allow these adverse moods.
I agree with the above sentiment to a very small degree because let’s face it, the nitty-gritty of a caregiver’s life is filled with anger-inducing depressive circumstances about which I don’t think caregivers should beat themselves up trying to handle with a happy face and a positive attitude. It just doesn’t work that well in the long-term. It’s a well-known fact, and one that is always talked about by the Alzheimer’s Association, that caregivers don’t take care of themselves because they don’t know how, or don’t have the support, to stop trying to do all of their life’s jobs by themselves.
“I’m obligated because my parents took great care of me, and now it’s time for me to take care of them.”
or
“For better or worse means taking care of my spouse, even though she’s getting the better of me, and I’m getting worse and worse.”
The problem with the above sentiments is that oftentimes the adult child or spouse start to resent the person for whom they are providing care. It’s like going to a job you hate but being held to an unbreakable employment contract; your employer is a loved one with a life-altering or terminal illness; and you’re not getting paid. “Taking care of a loved one in need is reward enough.” No, it’s not.
I’m not bitter, I’m simply realistic. Caregiving is one of the most difficult jobs any of us will hold and we can’t do it all by ourselves. My blog article, Caregiving: The Ultimate Team Sport, encourages each person in a family caregiving situation to create a team of co-caregivers to more effectively get the job done. And please take a look at the other articles found in that same category of Caregiving. I hope you will find encouragement in those articles – some based on my own experience, and some from other caregivers’ shared experiences – especially when a positive attitude and a happy face just isn’t working for you.
Elder Abuse Checklist
All of us need to be aware of the varying signs of elder abuse- financial or otherwise. I hope this article from another Blog proves helpful to one and all.
80 Year Old Woman with Dementia Dumped at the ER by Nursing Home
80 Year Old Woman with Dementia Dumped at the ER by Nursing Home.
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.
Living: the ultimate team sport 