quality of life
I am not a writer, I happen to be a woman, mother, spouse, sister, grandmother, aunt, and a friend who has tried her hand at writing. I wrote a novel, Requiem for the Status Quo, to honor the father for whom I provided care when he had Alzheimer’s disease – a disease that took his life on October 13, 2007. I didn’t set out to be a novelist – arguably, I’m really not a novelist at all – but I knew it was imperative that I do something important for future Alzheimer’s caregivers and to use whichever vehicle was needed to accomplish that something. For me, it was writing a book.
Then what? What else could I possibly do to magnify the impact I set out to make regarding the disease that takes everyone it settles on, and forever changes the family members associated with its victims?
What I did was join AlzAuthors, a digital and community platform that uses the art of storytelling to light the way for those impacted by Alzheimer’s disease, to advance understanding of the disease, and to lift the silence and stigma of Alzheimer’s and other dementias. As a newly published author and a survivor of dementia caregiving, I was extraordinarily impressed – and still am – with the organization founded by three daughters of Alzheimer’s who sought a place of refuge and resources for their own caregiving journeys.
Then a funny thing happened – one of those founders asked me to join the management team of five, an invitation I gladly accepted, and with the guidance of a business consultant, who just happens to be my own daughter, AlzAuthors went from being a growing community of authors to a 501(c)(3) non-profit organization.
Then something else happened: although not serious, my health took a debilitating turn that now requires me to step back from my AlzAuthors responsibilities. Only the patient knows what she can handle, and what I know is that my focus needs to be on my health, as well as on the precious family that means so very much to me. I am still an AlzAuthor and I very much support AlzAuthors’ non-profit mission, but I will do so from a slightly removed distance.
Of this I am certain, and I quote Pico Iyer when I state:
In an age of acceleration, nothing can be more exhilarating than going slow.
In an age of distraction, nothing is so luxurious as paying attention.
In an age of constant movement, nothing is so urgent as sitting still.
I completed another novel with a message I feel is of great importance that I will publish later this year. Currently, however, I have more important matters on which to spend my time and energy.
Now is my time for sitting still – focusing on me, and focusing on my family. That is the latest chapter I am writing for my life, hoping to get it right, once and for all.
Since Baby Boomers and their family members face the possibility of arranging long-term care (LTC) housing for a loved one, or will be on the receiving end of long-term care, I am providing information related to what one can and should expect while living in a LTC setting. This will be a multi-part series wherein I provide a real-life scenario, and the Code of Federal Regulations (CFR) citation applicable to that scenario. Since I live in Washington State, I will also provide the applicable State statute, and I encourage those living in other states to do an internet search for “long-term care residents’ rights in your state” in order to locate your local laws. All scenarios assume that the resident in question is cognitively able to make his or her own decisions.
My kids aren’t the boss of me!
I’m so excited, my soaps are about to start and I have the whole afternoon to myself. I’m looking forward to seeing how they’re going to get rid of Sami. She’s been on Days of our Lives since she was a young teenager; that’s a long time in soap opera years. I’ll just wheel into my bedroom, get my knitting basket, and set myself up in front of the television.
All right, now I’m ready; it’s time to tune in!
There’s a knock at the door, drat, right when my first soap is about to start. “Come in!” Oh no, it’s that perky activity person. When they interviewed candidates for her job they must have had a perkiness contest as one of the criteria for hiring. I’ll see if I can get rid of her real quick-like. “Hello, Ruby, what can I do for you today?”
“What can you do for me? Don’t be silly, it’s what I can do for you that matters, Mrs. Tanaka. We’re showing a movie in the main living room that I’m sure you’ll like. It’s called, 101 Dalmatians, won’t that be great?”
A movie about dogs instead of my soap operas? Not going to happen. “That’s okay, Ruby, I’m happy just watching my TV shows. Maybe some other time.” Now I’ve gone and done it, Ruby looks baffled, not sure how to change the course of her task.
“Mrs. Tanaka, I was told to wheel you to the living room for the movie and not take ‘no’ for an answer.” She pulled a piece of paper out of her smock’s deep pocket and showed it to me. “Look right here. It says, ‘The family has requested that their mother not spend an inordinate amount of time in her room and that she attend at least four activities per week.’ It’s already Thursday and you haven’t even been to one event this week. We have to make up for lost time.” She bent over my wheelchair, unlocked the brake and positioned herself behind it.
“But I don’t want to see the movie, I want to watch television. I love my soap operas and today’s the last day Sami is going to be on Days. Please, I don’t care what my children have requested, I’d really rather stay in my apartment.”
Ruby leaned over, picked up my yarn and needles, and placed them in my knitting bag on the floor. “Come on, I’m sure you’ll like it once you get there.” Pushing with all her might, Ruby escorted me out of my room, thus bringing an end to all my plans for the afternoon. Those children of mine have no right meddling into my private life. “Ruby, whose opinion matters most: the person who lives at this assisted living facility, or those who don’t? This isn’t fair; don’t I have rights?”
Mrs. Tanaka was coerced to go somewhere she didn’t want to go; because she was confined to a wheelchair, her ability to stand her ground by refusing to attend an activity was compromised. Additionally, although this resident can get around her apartment in her wheelchair, wheeling herself long distances is very problematic for her; as a result, once in the living room she would require assistance to return to her room, rendering her a captive audience.
42 CFR 483.10 The resident has a right to a dignified existence, self-determination, and communication with and access to persons and services inside and outside the facility. A facility must protect and promote the rights of each resident, including each of the following rights:
(a) Exercise of rights.
(1) The resident has the right to exercise his or her rights as a resident of the United States.
(2) The resident has the right to be free of interference, coercion, discrimination, and reprisal from the facility in exercising his or her rights. See also, Washington State law: RCW 70.129.140
Mrs. Tanaka has the right to make choices that are important to her. She wanted to watch television – not attend a kids’ movie. Regardless of what her adult children want, Mrs. Tanaka’s rights trump theirs.
42 CFR 483.15 Quality of Life A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life.
(a) Dignity. The facility must promote care for residents in a manner and in an environment that maintains or enhances each resident’s dignity and respect in full recognition of his or her individuality.
(b) Self-determination and participation. The resident has the right to:
(1) Choose activities, schedules, and health care consistent with his or her interests, assessments, and plans of care;
(2) Interact with members of the community both inside and outside the facility; and
(3) Make choices about aspects of his or her life in the facility that are significant to the resident. See also Washington State law RCW 70.129.140
Note: there are even more legal citations applicable to the above scenario; a quick search of 42 CFR 483 on the internet provides all laws relating to long-term care residents rights. If you or a loved one need assistance regarding LTC residents rights, contact your local LTC Ombudsman office which can be located at the National Long-Term Care Ombudsman Resource Center.
Part 2 of this series will deal with the illegal practice of requiring residents to sign a Waiver of Liability prior to being admitted to a facility.
Were you eating breakfast in bed at the time?
Or perhaps while sitting in the easy chair next to your bed, you tried your very best to ignore the urge to purge … but you couldn’t wait any longer for someone to assist you so you let it all out, leaving you in a shameful way, sitting in a mushy pile of excrement while a stream of urine puddled at the base of your chair.
Welcome to the life of a vulnerable adult living in a nursing home. From coast to coast across the United States skilled nursing facilities (SNF) are filled with adults needing the greatest amount of assistance with their activities of daily living (ADLs) – toileting is one of those ADLs.
The following true scenarios occurred recently at a nursing home in a Seattle suburb, and at a similar facility in a suburb of San Francisco.
A man who is fully reliant on mobility assistance pushed the call button near his bed to register a need for assistance. In this case, he needed to go “Number 1” and “Number 2” and had the audacity to require assistance while the staff was busy attending to other residents’ needs – but not his needs. When a staff person finally entered his room an hour later, she did so to simply indicate that she didn’t have time to take him to the bathroom so he should just go in his pants.
A woman equally as vulnerable needed the assistance of a staff person upon waking in the morning and – knowing that breakfasts were brought around to the rooms at 7 a.m. – the 91 year old started to press her call button at 6 a.m. hoping to have her morning pee prior to the arrival of her breakfast tray an hour later. That “luxury” was one that would not be afforded her; instead, a caregiver brought a breakfast tray to this patient in the seven o’clock hour and when the patient asked if she could receive help to the toilet prior to eating her breakfast, the employee told her to just go in her pants because no one had time to help her at that moment.
I can’t help myself – here’s another incident: A staff person helps a woman to the toilet first thing in the morning. The woman who is clothed in a lightweight nightgown finishes using the toilet and is ready to receive assistance back to her bed – but lo’ and behold, the staff person forgot to place the call button within close reach of the patient so she is not able to alert someone of her desire to go back to bed. Enough time has passed that by this time the patient is shivering and screams for help – screams that went unnoticed for a quarter hour. In desperation this elderly woman somehow managed to lean far enough forward to push over a metal trash pail which she then kicked repeatedly until someone finally arrived to see what all the commotion was about.
These stories don’t paint a very pretty picture do they? They depict a low quality of life that no one deserves.
What does Quality of Life mean to you?
- Eating at fine dining establishments?
- Having a clothing wardrobe that rivals the catwalks of Paris?
- Driving in a luxury vehicle that provides amenities previously only found in limousines?
For most of us, quality of life boils down to leading a dignified existence in which we are allowed to take advantage of the basic necessities of life. For me, those necessities should include a safe living environment, sustenance, the inclusion of loving family and friends in my life, the freedom to make choices about matters that are important to me, and being on the receiving end of respectful behavior from those with whom I come in contact.
The most vulnerable among us should expect no less than those basic necessities, but “the system” isn’t working to guarantee those basics. Try to imagine, if you will, your own grandparent, parent, spouse, partner, or other family member in any one of the above scenarios. How comfortable are you with that type of day-to-day existence for them? You’re not comfortable at all – as a matter of fact you’re feeling a bit uneasy about this whole subject matter. I’m sorry to place doubt in your mind about the care your loved one is receiving but I’ll just bet that you need to get out of the comfort of denial you’ve been enjoying and into the eye-opening role of resident advocate.
Lack of caring = lack of care. Nursing home management is a tough job to do correctly, but I know it’s possible because there are some reputable and well-run facilities out there – not perfect by any means, but fairly acceptable. So yes, some nursing facilities employ stellar care staff but there are also those employees who just don’t give a damn. “I go to work. I go home after work. I get paid. What more do you want from me?” Caring – that’s what we want. You’ve chosen to work in this particular type of environment so don’t act like you didn’t know what you were getting into. Withholding proper care for those who have no recourse but to depend upon you is not only unfair, but it’s illegal. And how about answering these questions about your own aging prospects: Do you think you’ll somehow skip the journey into old age? Do you not realize that you too will be as old as the patients whose care is entrusted to you? What type of care will you hope to receive? Does it resemble any of the scenarios I’ve illustrated above – or are you under the impression that you’ll be at a “Champagne and Chandelier” type of place where you’ll be waited on hand and foot?
Not gonna happen.
This article just scratches the surface of the sub-standard care that can be found in nursing facilities. I only mention the toileting issue because it’s been front and center in my experiences with some of my acquaintances lately. One place to start getting some positive traction where these matters are concerned is the National Long-Term Care Ombudsman Resource Center where you’ll find links to advocacy programs in your state. Call those local representatives and report any concerns you may have about how your loved one is being cared for, or not cared for, in their nursing facility, assisted living facility, or group home.
If you act on behalf of your loved one, you’re also acting on behalf of everyone else in the facility because trust me – your mom isn’t the only one being neglected on her nursing home floor.
I strongly encourage you to read the above article. Too often physicians with insufficient training on elder-health issues dismiss the early signs of Alzheimer’s or other dementia as simply being age-related developments. Doing so presents the risk of missing the small window of opportunity in which to treat cognitive issues early on, rather than when they have fully taken up residence in a patient.
Sure, there’s nothing yet that prevents or cures the disease, but being able to manage the symptoms early on certainly adds to the quality of life that both the patient, and their loved ones, seek to experience.
For those of you who have taken on the role of advocating for your loved one: when you escort your loved one with early memory loss or confusion to the doctor’s office, do not back down when he/she concludes the symptoms are to be expected due to advancing age. NO! Those symptoms could very well be indicative of disease-related dementia, OR the symptoms could be caused by medication side-effects (blood pressure medication, seizure medication and the like) or other medical conditions, such as urinary tract infection (UTI.)
It’s all about advocacy. Do you go the easy route and take the doctor’s word for it, or do you push for worthwhile diagnostics to rule out any other serious or life-changing causes?
In an earlier article, “Retirement planning – its not what you think,” I talked about the planning required to have a quality of life after retiring from one’s job that relies on spending your time in a way that pleases you, and benefits others.
My closest friend, Sophia (not her real name), is in her 80th year of life and for the seven years that I’ve known her, Sophia has struggled with boredom, but not just boredom per se. Sophia wants to matter; she wants to make a difference; she wants to contribute to the world around her. In a recent e-mail to me, Sophia said:
“There are too many active Seniors roaming around the coffee shops and Malls wondering what to do next. Even my friend Walter, at age 97, felt a sense of accomplishment yesterday when he washed all the bed linens and remade the queen bed – this done using his walker, back and forth.”
Sophia epitomizes the bored retiree that I discuss in my article, “Voices of the bored retirees.” We often think that when we retire we’ll be satisfied with being able to golf whenever we want; sleep in as long as we want; work in the garden whenever we like, and read all the books we’ve stacked up, but not had the time, to read. My father was one of those retirees who longed for the opportunity to be on the golf course as often as he wanted. A month post-retirement, he was bored with it all.
Another quote from my friend Sophia: “I really believe that much that we call Alzheimer’s is just a simple lack of interest in remembering what no longer matters. There is definitely a veiled space that occurs now and then when it is either too painful to remember, or not worth it to try. This, in addition to physical pain and boredom, can reach a kind of black hole.”
I know my friend very well, so I know that she doesn’t support that type of Alzheimer’s reasoning, but what she said really resonated with me. Too often we focus too much on what doesn’t matter, and far too little on what can matter greatly in our remaining years. Gerontologist S. Barkin believes that we have a responsibility to actively walk through our retirement (or Baby Boomer) years:
“What do we want to do for the remaining time in our life? We all should be mining our experiences and the wisdom therein to help with our present, and our future paths.”
Most of us, even when we’re enjoying the relaxation we so richly deserve in our retirement, truly strive to create a new purpose for our life. We want a reason to get up in the morning. We strive to contribute to the community around us.
Does the retirement age need to be raised in order for that to occur? Or can we be just as effective, and less bored, by cultivating a lasting purpose after we’ve entered the long sought-after retirement phase of our lives?
O.K. BABY BOOMERS OUT THERE:
- What’s your plan?
- What’s working – or not working – for you?
- What’s your cure for boredom?
The more a person becomes dependent on others, the more protection he needs. A person with dementia needing the assistance of others is considered a vulnerable adult. He can’t defend himself or speak up for himself. He can’t demand exceptional care, courtesy, and respect. As his advocate – that’s where you come in. When he doesn’t have a voice – you step in to be that voice. Your reward will be great if you succeed in doing so.
Part of what I do in my working life is to advocate for vulnerable adults by doing what I can to promote dignity and quality of life for those I have the privilege to serve. As a family member, or good friend, to an adult with dementia, your task is a monumental one because along with your caregiving role, you must also excel at the task of advocacy. In my blog article, “Be an Advocate for your Loved One” posted on this blog November 14, 2011, I discuss the various ways in which you can advocate for your loved one. This current article is the last article in my “Understanding Alzheimer’s and other dementia” series and it addresses the issue of dignity and privacy.
As those of us who have, or have had, loved ones with dementia we know without a shadow of doubt, that our loved one’s current condition does not reflect the pre-Alzheimer’s/dementia person. A grandmother who previously never spoke the “F-word” now speaks it as though it were just another word in her vocabulary. A previously modest and distinguished gentleman now routinely removes his clothes in front of others, and/or may be inclined to grope his caregivers or other residents. A former globally recognized businessman, sought after for his abundant knowledge in his field, now needs others to feed him and has lost the ability to string a meaningful sentence together. Our loved one’s new normal is shocking to those of us who are close to the person with dementia, and completely foreign to those who are not.
Keeping people informed about your loved one’s condition.
Those who definitely have an attachment to your loved one: friends, coworkers, close neighbors, and of course family members, will probably appreciate knowing what’s going on with him. It’s important to use discernment when deciding who needs to know – and who doesn’t. And thanks to e-mail and texting, we can update people immediately and thoroughly with no need to pick up the phone. That’s truly a bonus, isn’t it? You’re already stressed and emotionally drained by your situation so having to conduct numerous telephone calls and provide the same update to several people would be prohibitive at best.
But with the ease of e-mail comes the temptation to be too thorough in the e-mail missive. You’ve already discerned who needs to be kept updated; now you need to use judgment on how much you say and how you say it. Does your neighbor really need to know about your husband’s incontinence? How would it benefit your mother’s former coworkers to learn that their former Marketing Executive now drools throughout the day and can no longer feed herself? More to the point – ask yourself this question: How would my spouse/parent/partner/sibling/friend feel if they knew I was providing all the gory details of their dementia progression to those near and dear to them? The answer, I believe, is obvious. If they could, your loved one would say, “Please don’t let everyone know what I’ve been reduced to.” Showing respect for your loved one includes protecting her privacy, and thereby her dignity. And I’ll tell you from experience – those on the receiving end of the information would rather you be brief and not overly descriptive.
Celebrate the uniqueness of your loved one.
Your loved one is not just some generic living and breathing person in the Early, Middle or Late stage of Alzheimer’s. He may not be able to do everything he previously could – maybe he’s not even able to speak – but you can still celebrate him as a human being. Everyone mourns what’s been lost; hardly any one celebrates their loved one’s remaining attributes. I learned a lesson from my father during the middle stages of his dementia. I was quick to finish his sentences, or rush him along by answering people’s questions for him. My dad didn’t have to use words to express his displeasure when I did that. He slumped in his chair, looked at me, and let out an exasperated sigh. I stopped right then and there and made no further attempts to rush him as he conversed. Doing so would take away one of the abilities he still had – talking and getting his point across. It may have taken him a long time to complete his thought, but he still had the ability to do so. Please don’t take away the remaining vestiges of your loved one’s independence and abilities. If you feel compelled to feed your loved one just because they take a long time to eat their meal, you’re training them to rely on you for that assistance when they could have been doing it on their own. Who cares if it takes 60 minutes instead of 15 to finish a plate of food? If they’re still able to feed themselves – celebrate that ability. Don’t take it away for your own convenience.
Walk into their reality – don’t force them to enter into yours.
We’ve all experienced conversations with our loved one wherein he or she talks about things that didn’t really happen, although they are convinced that they did. What’s the harm in agreeing with them and going along with their story. Your wife says, “Didn’t you enjoy that trip to the Grand Canyon we took with the kids a few years ago?” O.K. – first of all you don’t have any children, and second of all, you’ve never been to the Grand Canyon. Instead of trying to convince her of what’s real – and making her feel bad/ashamed in the process – talk about the great view, or how all the kids fell asleep in the car and missed the entire gorgeous spectacle. I can guarantee that if you change your paradigm regarding this development, both you and your loved one will be better off. The Alzheimer’s Association has a great adage that they offer us caregivers to help us along the way. If you don’t insist – they can’t resist. I challenge you to go with the flow instead of trying to paddle upstream. Don’t cause contention. A little make-believe goes a long way and harms no one.
AARP magazine reviewed the book Dancing with Rose: Finding Life in the Land of Alzheimer’s by Lauren Kessler. This memoir by Ms. Kessler is portrayed as “an Alzheimer’s tale that’s warm, uplifting, even hopeful – qualities not normally associated with the illness. This odd dichotomy – joy atop a ravaging disease – makes this book a refreshing standout.” Alzheimer’s and other dementia have the ability to peel away a person’s former mask to allow what’s underneath to surface – pleasant or not. What Ms. Kessler learned in her journey with her mother is that “if viewed from a different perspective, Alzheimer’s is not the end of personhood.”
Yes – dementia changes who your loved one is. It oftentimes reduces him or her to childish, and then infantile behavior. But they are still a person. They are no less worthy of your respect and your compassion. This hardest task of your life will end some day. In the interim, may you be merciful to your loved one and may those with whom you are associated support you along the way.