More often than not, a senior citizen moving into a long-term care (LTC) facility is doing so under duress. “My kids said they’re not comfortable with me living on my own anymore. Well I’m not comfortable living in this old folks home!”
(Photo credit: Wikipedia)
Sound familiar? It should. I am a LTC Ombudsman in Washington State and I can’t tell you how often I hear residents who provide nothing but negative comments about their living conditions. Regardless of how good the building; regardless of how fabulous the food; regardless of all the fun activities in which the residents participate, they are still not happy because the overriding dissatisfaction of not being in control of where they want to live colors all that they do.
And I agree with them.
Losing control and losing independence – a natural outcome of getting older? Gosh, I hope not. For the most part, a person moving into a long-term care facility has been in charge of their life – managing finances, choosing when and where they want to drive in their vehicle, eating whatever they want, whenever they want – in short, doing whatever they damn well please! Suddenly someone else, regardless of how well-meaning, takes those freedoms away and those choices because they’re not comfortable leaving mom and/or dad alone in their own house.
In my article: “Adjustment disorder: a long-term care facility side-effect,” I talk about the difficulties that befall the elderly as they endeavor to acclimate to senior living. Think about it! Going from a schedule-free life to a regimented one is difficult – whether you’re a young adult going into the military, or a senior citizen moving into an institutional living situation. Both generations suffer greatly during this adjustment period but the adjustment takes longer when you’re in your late 70’s and upward. And don’t forget, if the senior citizen wasn’t the one making the decision – choosing to move out of her home and into a senior housing community – the adjustment period will take longer still.
How can the adjustment period be made easier?
As advocates for residents in long-term care living situations, LTC Ombudsmen emphasize and promote a resident’s right to make choices about pretty much everything that goes on in their new “home.” What a novel idea! Some of the choices that we know are important to residents are:
Choosing the clothes they want to wear.
Choosing what time they want to go to a meal. Even if the resident wants breakfast after posted dining room breakfast hours, the culinary staff must make reasonable accommodation and provide some sort of breakfast item for that resident.
Choosing which activities – if any – in which the resident wants to participate. No one should be forced to go somewhere against their will – that’s called coercion. “Come on sweetie, you’ll like it once you get there.” No!
If the resident is on some sort of care plan in the facility, the resident has the right to refuse care, even if it might be to that resident’s detriment. When she was living in her own home, she had that right – nothing’s changed – only her environment.
The resident can even choose to move out of the long-term care facility if she chooses. Don’t forget, it wasn’t her decision to move there anyway. Long-term care housing isn’t a prison – she can leave if she wants to, even if doing so goes against the wishes of the family, and against the advice of her physician.
The bottom line is that residents in long-term care facilities aren’t children who need someone else to make decisions for them. Granted – some residents with major cognitive decline may rely on others, such as a Power of Attorney (POA), to make decisions for them – but even then, that POA should be making decisions that the resident would have made if he/she were still capable of doing so.
Put yourself in your parent’s or grandparent’s shoes. How would you feel if your opinions, wishes, and rights were dismissed? Feels lousy, doesn’t it?
How in the world did I get lost driving to the supermarket – a route I drive at least once a week!
My words are getting all jumbled up and my sentences aren’t making sense.
What’s happening to me?
Are you one of the many people who started to take a medication to resolve a condition, or at least to make it better, only to end up with distressing – and life-changing – mild cognitive impairment?
How long did it take for you and your doctor to realize that this horrific change of condition was caused by a medication that was added to your health regimen?
What types of expensive, and grueling, tests did you go through prior to coming to that conclusion? Did any of you go through neurological testing?
And how long did it take for you to feel “normal” again once you took your doctor’s advice to either go off the medication or replace it with a medication that did not cause cognitive decline?
I am personally aware of several people who experienced cognitive decline after taking the Pfizer drug, Lyrica (pregabalin). This drug was originally intended for treatment of neuropathic pain and as an anti-seizure medication, but was approved for treatment of fibromyalgia in 2007. Additionally, cholesterol-lowering statin medications oftentimes cause the same cognitive outcomes. And with the Pfizer drug Lyrica, increased depression – even suicide or newly diagnosed depression – were directly linked to this drug.
As Baby Boomers, we’re entering a phase where, depending upon what ails us, we start adding prescription medications to our health regimen in an attempt to have a high degree of health and well-being.
We need to be completely aware of how a medication may affect us, but it’s unfortunate that most of our awareness is dependent upon the Patient Information Sheet provided by the pharmaceutical companies. These information sheets are sketchy, at best, and carry only half-truths, at worse.
Do you have similar experiences you can share? We’d like to hear from you because awareness, and education, will help us all.
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.
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.
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.
My Dad and I on a picnic, Spring 2005.
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.
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.
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.
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.
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.
Putting together an extended vacation to a tropical paradise? EXHILARATING!
Figuring out how to help mom and dad with their increasing care needs? UNEXPECTED!
(Photo credit: Wikipedia)
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!
Taking a walk with my Dad.
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.
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.
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.
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.
(Photo credit: Wikipedia)
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.
Cab Calloway still has a musical impact to this day! (Photo credit: Wikipedia)
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.
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 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.
Where will your search for senior housing land you?
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!
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?
(Photo credit: Wikipedia)
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.
(Photo credit: Wikipedia)
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.
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.
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.
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:
The original Piggly Wiggly Store, Memphis, Tennessee. (Photo credit: Wikipedia)
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.
I don't know why THIS guy is so happy! (Photo credit: Wikipedia)
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.
This post, from a wonderful Blog about caregiving, http://www.letstalkaboutfamily.wordpress.com provides an excellent idea. It’s never too late to start this project for a loved one with Alzheimer’s or other dementia.
insurance, n. A thing providing protection against a possible eventuality. Concise Oxford English Dictionary, 11th Edition; 2004.
Image via Wikipedia
Auto insurance, home or renters insurance, and health insurance – we understand these policies and know that more likely than not the need for the aforementioned insurance policies will rear its ugly head in the near or distant future so we pay the premium for said policies, hoping we won’t need it, but sleeping better at night because we have it.
Why is purchasing long-term care insurance such a difficult step to take for me and my husband?
Unquestionably, it’s expensive;
Fearfully, companies who offer this product are going out of business left and right and may leave us holding an empty bag;
Definitely, it’s a real difficult type of policy to understand; but
Undeniably, the financial need for it can outweigh the cost of purchasing it.
Image via Wikipedia
My husband and I have still not made an effort to look into it further. Here are my two reasons based on family experience – both of which tend to contradict each other:
My father’s long-term care insurance policy. My father had a long-term care insurance policy for which he paid premiums for at least 20 years – no small amount of money to be sure. He was diagnosed with Alzheimer’s at the age of 84 and died five years later. His care needs at the retirement facility in which he had lived for 13 years didn’t meet the insurance reimbursement threshold until his final month of life. As with most policies, the insurance holder’s care needs must meet a defined level of care before the insurance company kicks in their assisted living care reimbursement payments. When that happens, the insurance holder no longer pays any more premiums. Twenty years of paying premiums for one month of reimbursement benefit.
My sister-in-law’s long-term care policy. My brother and sister-in-law purchased their long-term care insurance policies when they were in their late fifties. Less than a year later my sister-in-law was diagnosed with early-onset dementia and approximately two years later drew benefits from her policy. A couple of years of paying premiums for what will be years of reimbursement benefit. If that isn’t the good news/bad news of long-term care insurance I don’t know what is!
I have no excuse. I know the devastating costs of long-term care because in my past professional life I worked for a senior housing provider and they represented the Champagne & Chandelier variety of assisted living. But even the generic assisted living providers charge high rental rates and as ones’ care needs increase, so do the care fees. This isn’t avoidance behavior on my part and I’m not squeamish about the subject of health and ones’ eventual death. I’m just finding it hard to take this leap into signing up for insurance, even though it holds the assurance of fending off the potential of total personal financial collapse without it.
How are you Baby Boomers dealing with this subject? If you finally bit the bullet and purchased a policy – how did you finally take that leap of faith?
I AM NOT LOOKING TO BE BOMBARDED BY SELLERS OF INSURANCE AS A RESULT OF THIS BLOG ARTICLE SO PLEASE DON’T GO THERE. But I welcome other constructive feedback for those of us on the brink of making this difficult decision.
Local and Federal governments have more red on their accounting ledgers than black. Citizens balk against any raise in taxes, regardless of how infinitesimal the increase. The same citizens demand more services from their government. How does one get what they need without paying for it?
THEY DON’T.
I’m not a politician – and never will be. I’m not a brilliant person nor do I fully understand all the nuances inherent in government bureaucracies. About this one thing, however, I am absolutely certain: many valuable services that were initially set in place for those considered vulnerable in our society are still desperately needed for even a modicum of dignity and quality of life. Did the needs suddenly disappear? NO. Did the vulnerable in our society somehow experience a miracle and are now fully capable of managing their lives on their own? NO. The needs are still there and the vulnerable in our society are being pushed to the wayside and are slipping through the cracks. Do I like paying taxes? NO. I guess I’m wondering how to generate funds for needed programs without “robbing Peter to pay Paul.” Taking from one program and sliding it over to a different program robs other needed services. If ever there was a Catch-22, this is it.
Let’s look at caregiver training. In Washington State, in the year 1996, caregivers were only required to pass First Aid training, CPR and HIV training, the Fundamentals of Caregiving training (22 hours), and had to successfully pass the State’s criminal background check.
With a first-aid card and some training about CPR and HIV, you can find yourself a challenging new job caring for the elderly and infirm, bathing them, feeding them, and fielding punches from them. For this you can make about $7.50 an hour. At McDonald’s, you can make more slinging burgers and fries. It’s a wonder anyone cares for the elderly and infirm at all.
The year 2000. For the third time in four years, the Washington State’s long-term-care ombudsman (who is independent of any government agency) pushed for more training for caregivers. “The Legislature and the industry both need to step up and say this is an important key profession…People who take care of human beings are important people.” State bill I-1029 passed which would increase the number of required training hours and implement specialty training for residents with special needs such as dementia, mental health, and developmental disabilities. Implementation of this Bill’s provisions was delayed and set to go into effect March 1st, 2002.
Fast forward to February 2002. Let’s look at another Seattle Times article, Caregiver-training issue causes split in state’s long-term-care community. After the Bill from the year 2000 passed, the Department of Social and Health Services didn’t get the training curriculum revised in time for the March 1st, 2002 implementation so the State Legislature delayed the start-up of the new training requirements to September 1, 2002. Private providers of long-term care – those not accepting Medicaid – would have to foot the bill to provide employee training, most certainly passing the costs along to their residents. Long-term care facilities that accept Medicaid payments would rely on the State Medicaid program to provide the mandatory additional training and the State contended that the budget does not exist to provide the mandated training voted into law from initiative I-1029. Time to go back to the drawing board.
Bear with me. Fast forward to November 2008. Let’s look again at another Seattle Times article, Voters back more caregiver training. In 2008 a revised caregiver training Bill was passed requiring a training increase from 34 to 75 hours for new long-term care workers and required caregivers to undergo a Federal criminal background check. This bill passed overwhelmingly. It’s great that the citizens of my fair State decided that anyone taking care of the vulnerable should be held to a high standard. Oops – in the same voting cycle, initiatives that would have imposed taxes on candy, soda pop, and other piecemeal purchases failed big time. These miniscule, microscopic taxes would have saved vital services for the vulnerable and would have helped the State pay for the “mandated” new training. No money – no increased training – no Federal background checks.
One more time. Fast forward to November 2011.Washington voters asked to boost caregiver training again, Seattle Times. The Legislature delayed the implementation of the 2008 Bill because of budget cuts. And during the voting cycle of 2011, a re-worked caregiver training initiative made it to the ballot once again as Initiative I-1163, right in the middle of an ever-increasing budget crisis, and the Washington State voters overwhelming approved it. Implementation of the new training and background check requirements are set to start in 2012. Lawmakers pushed implementation to 2014 but the good news is that the Legislature won’t be able to delay implementation of the new requirements without a two-thirds majority. As of March 1, 2012 – the Washington State legislature has yet to finalize any enactment of the Bill protecting vulnerable adults; those that the voters of my state approved – and voted for – numerous times since the early 1990’s…stay tuned…
WHAT’S HAPPENING IN YOUR STATE?
HOW IS YOUR STATE PROTECTING YOUR VULNERABLE ADULT POPULATION?
I’ve found the Alzheimer’s Reading Room to be very helpful in my efforts to continually improve my understanding of Alzheimer’s and other dementia. The good news? Subscribing to the Reading Room is free! I hope all benefit from this attached article about dementia in the 21st century.
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.
This VERY comprehensive article is designed for a person’s elderly parents but guess what…us Baby Boomers need to be aware of these resources as well so I want to pass this article along to you! It helped me – I hope it’s a great resource for you as well.
Most people don’t want to talk about end-of-life issues but all of us know it’s a topic requiring early discussion and appropriate timing to be of any use when emotional, and sometimes emergent, decisions must be made.
Image via Wikipedia of a patient for whom Dr. Alzheimer provided care. This patient became the model for diagnosing Alzheimer's dementia.
My siblings and I benefited from my parents’ end-of-life documents that dictated their wishes should we need to become involved. My mother died in her sleep in 1994 so no active involvement was necessary but my father, suffering with Alzheimer’s for five years by the time he died in 2007, gave us a gift by spelling out in detail his end-of-life wishes set in place at least a decade before he died. Think of an Advanced Directive or Living Will as a gift to your loved ones. It certainly was a gift to my siblings and me.
An organization in Washington state, Compassion & Choices, worked with Seattle University Clinical Law Professor, Lisa Brodoff, to create a new advance directive for people with Alzheimer’s and other dementia. This same law professor was instrumental in the passage of legislation in Washington State creating the Mental Health Advance Directive for people with mental illness. This statute is considered to be model legislation for other states wanting to expand the rights and planning options for people with mental illness. Bravo Washington State!!!
Although not yet available, the new Alzheimer’s/Dementia Advance Directive will be based on one created by Professor Brodoff for a 2009 Elder Law Journal article titled (excerpt attached): Planning for Alzheimer’s Disease with Mental Health Directives. The new Alzheimer’s/Dementia advance directive is not intended to replace existing end-of-life documents such as a Living Will and/or Durable Power of Attorney for Health Care, but is designed to work in concert with those documents to ensure that any issues important to the patient with dementia that are not addressed in standard advance directives are honored as much as possible.
What additional issues are addressed in the new advance directive for those with Alzheimer’s or other dementia?
Potential issues that might be addressed are preferences regarding:
care in and outside of the home;
financing of said care;
caregiver choices;
involuntary commitment;
consent to participation in drug trials;
suspension of driving privileges; and
any future intimate relationships.
To get on the mailing list in Washington state to receive a copy of the new advance directive contact Compassion Washington: by email, info@CompassionWA.org or by calling their office at: 206.256.1636 or Toll free: 1-877-222-2816. At the very least, regardless of where you live, using their model as a guide when creating your own Advance Directive may be helpful when such Directive affects the life of a loved one with dementia. Being prepared for the unexpected, or even what you indeed suspect might be a future health issue, provide peace of mind for the patient and for his or her caregiver.
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.
Fast forward to February 2002. Let’s look at another Seattle Times article, Caregiver-training issue causes split in state’s long-term-care community. After the Bill from the year 2000 passed, the Department of Social and Health Services didn’t get the training curriculum revised in time for the March 1st, 2002 implementation so the State Legislature delayed the start-up of the new training requirements to September 1, 2002. Private providers of long-term care – those not accepting Medicaid – would have to foot the bill to provide employee training, most certainly passing the costs along to their residents. Long-term care facilities that accept Medicaid payments would rely on the State Medicaid program to provide the mandatory additional training and the State contended that the budget does not exist to provide the mandated training voted into law from initiative I-1029. Time to go back to the drawing board.
Living: the ultimate team sport 