Quality of Life
Long-term care residents’ rights: Part 3
Welcome to Part 3 of my series on long-term care (LTC) residents’ rights. Part 1 focused on a resident’s right to make choices that are important to her. In Part 2, I discussed the topic of LTC admission procedures, specifically, a Waiver of Liability document that is oftentimes included in the admission packet. Today’s topic speaks of the practice of illegal discharge from a LTC residential setting.
Adios, Mr. Reilly
“What do you mean I have a week to move my father? For what reason?”
Raymond Ortiz, the Easy Breezy Group Home owner, situated himself in the plush chair in which he was sitting, opened up the manila folder that was on the desk in front of him, put on his reading glasses, scanned the piece of paper inside, and then closed the folder. “I know this seems to be coming out of the blue, but the staff and I have decided that your father just doesn’t fit in with the rest of the residents. They, and us, would be happier if Harold wasn’t living here.”
I couldn’t believe what I was hearing; dad had lived at this group home for three months without a complaint from anyone, and now this? “What specifically has he done – or not done – that renders him an unsuitable resident? What do those notes in my dad’s file specify as the reason?”
“You see, it’s not as simple as that. Your father hasn’t complied with the way the other residents live, and let’s not forget, they were here before him.”
I was having a hard time controlling my temper. Through gritted teeth I said, “Specifics, please.”
“For one, he wakes up earlier than the other five residents – sometimes as early as 6 am – and in the evening, he insists on staying up well past 10 pm. His early morning schedule disturbs those who are sleeping, as does his late night schedule. I’m sure you can understand that sleep is a very important aspect of our residents’ healthcare and when that is jeopardized because of just one of our residents, we have to take measures to accommodate the majority.”
“Wait a minute, you mean to tell me that the other residents’ schedules are more important than my father’s? That’s utterly ridiculous. Tell me, is my father doing jumping jacks in the middle of the living room with the stereo blaring while everyone is asleep?”
“Now you’re being silly.”
“No, Mr. Ortiz, now I’m getting angry. If dad isn’t making a ruckus, why the concern? My father has always been an early riser – moving in here shouldn’t require that he change that feature of his life; same goes for staying up later than the others. His end-of-day routine has always involved sitting down with a good book and reading – sometimes for hours on end. What’s so disruptive about that?”
“Two things, really. He flushes the toilet, which of course makes noise, and the resident on the other side of the bathroom hears the flush and his sleep is disturbed. Also, the evening caregiver has evening chores to do and afterwards, lays down on the couch to be rested up for the next day’s activities. He can’t sleep while your father is still awake.”
I closed my eyes and tried to compose myself. “Look, when my dad moved in, you made a point of telling us that Easy Breezy is his home, just as if he owned the place, just as if he’d lived here all his life. Kind of like, ‘Mi casa es su casa’ and I took you at your word. Nothing you’ve said today jives with that sentiment, and I’m quite sure that nothing you’ve mentioned is grounds for throwing him to the curb. First of all, I know you have to give written notice and it has to be given with more notice than you’ve given me, and I’m damn certain your flimsy reasons won’t stand up to legal scrutiny once I’ve looked into this.”
“Now Ms. Reilly, no need to get all huffy about this. That’s just the way it is; majority rules.”
I stood up, slung my purse over my shoulder and said, “We’ll see about that Mr. Ortiz. I’ll be back.”
As Ms. Reilly surmised, any notice of discharge must be made in writing and must be provided at least 30-days from the date of discharge from the facility (said requirements stated at length in 42 CFR 483.12.) Federal and State governments make it very difficult for administrators/owners to move a resident out of their property. As stated in the CFR below, there must be a very valid reason, e.g., health and safety of individuals are in jeopardy, and certainly that is not the case in the scenario above.
42 CFR 483.12 Admission, transfer and discharge rights.
(2) Transfer and discharge requirements. The facility must permit each resident to remain in the facility, and not transfer or discharge the resident from the facility unless –
(i) The transfer or discharge is necessary for the resident’s welfare and the resident’s needs cannot be met in the facility;
(ii) The transfer or discharge is appropriate because the resident’s health has improved sufficiently so the resident no longer needs the services provided by the facility;
(iii) The safety of individuals in the facility is endangered;
(iv) The health of individuals in the facility would otherwise be endangered; See also Washington State law 70.129.110
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 4 of this series will deal with abuse and neglect of residents in LTC facilities. Part 4 will be posted on Wednesday morning, November 19.
Long-term care residents’ rights: Part 2
I hope you have already had a chance to look at Part 1 of this series on LTC residents’ rights. Today’s topic focuses on one aspect of the admission process that oftentimes slips through the cracks unnoticed.
The case of the missing Kindle Fire
“Housekeeping!”
That’s my cue to vacate the apartment and let a staff member clean my place. I turned off my Kindle Fire, placed it next to my reading chair, and opened the door. “I’m so glad you’re here. I love having a clean apartment and always look forward to my weekly cleaning.”
“You are Mrs. Ruth Milliken?”
“Yes, that’s me. Are you new on staff at Fairview Manor?”
“Yes, I am Carolina, I start this week. May I come in and clean?”
“Certainly, I’m heading to lunch so take your time.”
********
It was so nice being able to take advantage of the good weather by having lunch on the patio for a change. I’m going to read a bit and then maybe take a nap; all that sunshine made me a bit sleepy. I unlocked my apartment door, made myself a cup of tea, and returned to my reading chair.
“Oops! I’d swear I left my Kindle right here on the table next to my chair.” I stood up and lifted the seat cushion, thinking perhaps that it slipped between the cushion and chair frame without my knowing it.
“Now this is silly, I know I placed it on the side table.” Just the same, I looked throughout my apartment to make sure I wasn’t mistaken. A sudden realization hit me, “That new housekeeper, she must have stolen it.”
I made my way to the Administrator’s office to report the mishap. “Jason, may I come in?”
“Certainly Mrs. Milliken, have a seat, how can I help you?”
I sat on the edge of one of the visitor chairs and relayed my suspicions about my missing Kindle. “So you see, I’m certain it must have been your new housekeeper, Carolina. She was the only one who had access to my apartment while I was at lunch.”
“Are you sure you’re not mistaken? Was your door locked when you returned from lunch?”
“Yes, it was; at least the housekeeper locked up after herself.”
Jason got up from his desk, retrieved a folder from the large file cabinet behind him, and returned to his desk. “I’m truly sorry you’ve misplaced your IPad.”
“It was a Kindle – the latest Kindle Fire and it was a gift from my daughter-in-law.”
“Okay – Kindle.” He opened the folder and thumbed through a few pages and folded back one of them. “If you’ll look right here, you’ll see that you signed a Waiver of Liability when you moved into Fairview Manor.” He turned the folder towards me so I could read it. “This is your signature, isn’t it?”
“Well, yes, that’s my signature, but you can’t be saying that you’re penalizing me for signing that document. I signed lots of documents that day, fully trusting that everything you placed before me was on the up and up. Let me read that thing.” I glanced through the wording and couldn’t believe what I was reading: Fairview Manor and its parent company, Senior Housing Corporation, accepts no liability for items lost, stolen, or otherwise misplaced.
I looked up at Jason who was comfortably reclining in his executive desk chair. “This is utterly ridiculous; if I had understood what you were asking me to sign, I would have never signed this piece of paper.”
“If you hadn’t, we would have had no recourse but to refuse your admission into our community.”
“But that housekeeper stole my property. You have a thief on staff here.”
“I assure you, every employee hired at Fairview Manor goes through a criminal background check – otherwise they can’t work here.”
“Did Carolina’s background check come back clean?”
“Her State background check came back but not the Federal. She has a clean slate in Oregon, I’m sure the Federal check will come back clean as well.”
I am absolutely stunned; I know the implications. “So she could have committed a crime in another state – which would show up on the Federal database but not the State one – and you let her work here without first knowing if she was cleared?”
Jason had the audacity to shake his head and chuckle. “I assure you, in all my years working in the industry, there’s never been an employee who didn’t pass with flying colors. I’m not worried about Carolina.”
I stood up and addressed the Administrator. “I can’t believe I’ll never see my Kindle again. You can’t possibly think that’s fair, Jason.”
“My hands are tied, fair or not.”
All employees working with vulnerable adults are not permitted to work in a facility without a completed criminal background check.
42 CFR 483.13
(c) Staff treatment of residents. The facility must develop and implement written policies and procedures that prohibit mistreatment, neglect, and abuse of residents and misappropriation of resident property.
(1) The facility must
(i) Not use verbal, mental, sexual, or physical abuse, corporal punishment, or involuntary seclusion;
(ii) Not employ individuals who have been
(A) Found guilty of abusing, neglecting, or mistreating residents by a court of law; or
(B) Have had a finding entered into the State nurse aide registry concerning abuse, neglect, mistreatment of residents or misappropriation of their property; and
(iii) Report any knowledge it has of actions by a court of law against an employee which would indicate unfitness for service as a nurse aide of other facility staff to the State nurse aide registry or licensing authorities.
(2) The facility must ensure that all alleged violations involving mistreatment, neglect, or abuse, including injuries of unknown source, and misappropriation of resident property are reported immediately to the administrator of the facility and to other officials in accordance with State law through established procedures. See also Washington State law RCW 70.129.130
The admission process into a long-term care facility is stressful on residents and their family members. What they fail to realize is that the resident agreement they sign, and all other sub-documents of that agreement, are legal documents: some of them binding, others not. As such, it is a very good idea to read them ahead of time and even have them reviewed by an attorney or legal advocacy group. Most states do not permit Waivers of Liability to be a part of the LTC admission process. Administrators, however, oftentimes succeed in slipping that document into the ream of documents residents must sign. The good news is that such waivers are not enforceable; the bad news is that residents assume that because they signed a Waiver of Liability, they have no recourse when their personal belongings are stolen by staff and/or other residents.
Washington State law RCW 70.129.105 Waiver of liability and resident rights limited. No long-term care facility or nursing facility licensed under RCW 18.51 shall require or request residents to sign waivers of potential liability for losses of personal property or injury, or to sign waivers of residents’ rights set forth in this chapter or in the applicable licensing or certification laws.
Since the Waiver of Liability is not enforceable, the flip side of that is that the facility is liable and should either replace Mrs. Milliken’s Kindle Fire or provide the funds for her to purchase a new one.
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 3 of this series will deal with the discharge/eviction of a resident from a long-term care facility. Part 3 will be posted on Friday morning, November 14.
2014: The year of no ideas a/k/a red states vs blue states
2014: The year of no ideas | Opinion | The Seattle Times.
Syndicated columnist, Leonard Pitts Jr. did it again: he wrote about issues that most of us are very concerned about and at least for this one reader/writer, he spoke for me. The above article addresses the precise way that I feel – and that many others feel – about red versus blue. Here’s a few quotes from the article that you should take the time to read in its entirety.
First a quote from President Obama, a quote that he premiered ten years ago and reiterated after the recent mid-term elections:
“I continue to believe,” said President Obama, “we are simply more than a collection of red and blue states. We are the United States.”
Now a few paragraphs from Mr. Pitts’ article addressing that statement:
“People for whom everything is about politics tend to forget that most of us do not see the world that way. Red or blue, left or right, most Americans simply want a government that works, that gets things done, and a nation that stands for something, that means something in the world beyond just a parcel of land where a bunch of people live. This is why Obama’s words electrified 10 years ago; they seemed to connect people to ideals larger than their own lives.
“And it is why the same words seem flatter than left-out cola 10 years later, the hope of larger ideals having been sequestered, government shutdowned, PAC’d and gridlocked down into a sobering realization of how truly small American politics can be.
“Cowardice squared off against cynicism Tuesday [2014 election day] and cynicism won. But there is something wrong when those are the only options on the ballot.
“We are supposed to be united states, the president says. But there are too many days lately when a sentiment that once grounded and ennobled feels fanciful and unlikely.”
And now my statement:
Whether we’re talking about State/local government or Federal – year after year, too many employees of each have failed to do their job. These employees don’t work behind desks in the hallowed walls of government; they square off on the football field where at least two opposing sides refuse to give an inch for fear that the opponents’ goals might be reached.
And I might add, goals that could very well benefit the American citizenry, but are turned down simply because the other team proposed them.
Doesn’t that seem shameful to you?
Long-term care residents’ rights: Part 1
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.
Your aimless life
‘Purpose in life’ can help reduce medical costs, study says | Nation & World | The Seattle Times.
Think of how you feel with the title of this article: Your aimless life. Now discern how you feel with the statement, Purpose in life. There’s no comparison, right? If the word aimless made you feel lost or empty, there’s a reason. The Oxford English Dictionary, 11th Edition, 2004, provides the following definition of aimless: adj. without purpose or direction. Not much can go right with that way of living.
In contrast, let’s look at the definition of purpose from the same dictionary: n. the reason for which something is done or for which something exists.
One can conclude therefore, that a person without purpose has no reason to live. That’s downright depressing, but that’s the point.
The above article from a recent Seattle Times issue highlights the benefit of reduced medical costs when a person successfully defines their purpose in life. Instead of focusing on reduced medical costs, however, I’d like to look at the less tangible – but more important – benefit of being in good health as a result of living a purposeful life. It’s amazing to me that just living and carrying out ones life with intention equates to being healthier than if one lived without any meaningful direction.
When a person enters retirement there is an initial exhilaration in not having to go through the drudgery of an 8 to 5 work day. Quite frankly, it would feel darn good not having to do anything you don’t want to do. Eventually, however, you might feel like you’re just drifting through that time of your life. You need to have a reason to get up in the morning that surpasses the joy of lingering over the morning paper and sipping a cup of coffee.
Don’t get me wrong; I’m not saying that you’re supposed to line up a new job, hang up your retirement sweatsuit, and return to the employment drudgery from which you escaped. I’d never promote that idea but I will stand by my belief that unless you have direction, you’re not going to be as happy – and as healthy – as you can be. Purpose and direction will mean something different for each of you.
Fulfilling long ignored house projects that will assure you and yours a safe and comfortable place to live for years to come? Fabulous.
Try your hand at growing your own vegetables and sharing with your neighbors or a local food bank? Delicious.
Volunteering for an organization that aligns with your world beliefs? Go for it.
Become a freelance writer ? Sharpen your pencil and get started.
What matters is not what gives you purpose, rather, that you put feet to that purpose. If it satisfies your life and gives you an added reason to get up in the morning, you’ve received the benefit that a purposeful life can provide.
It’s really as easy as that. You have many years ahead of you, make them count for you and make them count for others.
And here’s something to consider, from the book The One Thing by Gary Keller:
Purpose may sound heavy, but it doesn’t have to be. Think of it as simply the ONE Thing you want your life to be about more than any other … Pick a direction, start marching down that path, and see how you like it. Time brings clarity, and if you find you don’t like it, you can always change your mind. It’s your life.
Don’t throw in the towel: you’re not done yet
Encore Entrepreneurs: How Five Late Bloomers Turned Big Ideas into Sweet Success.
The attached article from Parade Magazine is a fabulous example of how a person can recreate their life – regardless of ones age, circumstances, or lot in life.
If you’re seeking a new direction in your life – or perhaps are in the process of recreating yourself – I’ve found 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. As for you – you are never too old to try something new – as long as you’re willing.
Trial and error approach. I constantly look for ways to improve myself (a task that will always keep me busy) in an effort to increase my influence on the community around me. 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 can work, however, if in doing so we discover what doesn’t work for us in our attempts to find what does.
Living or playing to your strengths. My life’s direction was greatly influenced by Marcus Buckingham, one of the world’s greatest authorities on employee productivity. 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 of its inherent dissatisfaction? That’s like doing the same thing over and over again, expecting different results. That has never worked for me, how about you? In addition to playing to my strengths, I try to play to my passions. As a person who’s not getting any younger, it makes sense that going forward I should avoid activities that drag me down and weaken me. Instead, I should 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. In 2013, I retired from my work as a volunteer certified Long-Term Care (LTC) Ombudsman – an advocate for the rights of vulnerable adults. As an Ombudsman, however, I knew my limits on “clinical atmosphere” so during my ombudsman career, any involvement with the older population excluded my participation in a nursing home or hospital environment. Throw me in the midst of adults living in assisted living or dementia residential settings, however, and I will make new friends and earn the trust of everyone with whom I come in contact. Add to that, with my enjoyment and effectiveness as a public speaker, I used that strength to provide talks to professional care staff, and to residents & their family members, on what it means to protect the rights of seniors who are not able to protect themselves.
Recognizing an open door when you see one. We are constantly bombarded by information whether through social media, radio and television programs, or even mini-publications such as Parade Magazine. As we wade through all of that input, it’s helpful to be alert to what that input might be trying to tell us. Sometimes the information brings to light an opportunity that will utilize both our skills and our passions for the benefit of others. But I’ve discovered that not every door that opens is the right door. I have to be extremely careful when considering a particular opportunity, because sometimes I’ve sensed an open door through which I’ve thought I should walk, only to find that it was the wrong door for me. If I don’t look before I leap, e.g., research the project, consider all of its requirements, measure whether or not I’m able to fully commit, I won’t be doing myself, or those connected with the project, any favors. It is worth my time to weigh all options; to write a list of Pros and Cons; to ask trusted individuals for their opinion and then make an informed decision. If this new opportunity that I’ve carefully considered allows me to play to my strengths and my passions, everyone benefits and there are few, if any, casualties along the way.
What about you?
Each of you has a talent or a skill-set that can be used long after you’ve officially “retired” from the workforce. Think about it: you spent years as an employee or business owner using that talent – why put it to rest? Finding new ways to utilize your life’s work is good for you; it brings a fresh outlook on what you’re still able to accomplish, and equally as important, might prove beneficial to others as you stretch your wings in your efforts to make the most of your talents.
Human nature: it’s under our control
Several years ago I took a class with the ominous sounding title, Death and Dying. That was a topic with which I was very comfortable so I signed up for it and enjoyed it immensely. There were many things offered relating to wisdom gained as we age and how best to live before we die, but the following advice was the best of all:
Cherokee wisdom – Two Wolves
An old Cherokee chief was teaching his grandson about life… “A fight is going on inside me,” he said to the boy, “it is a terrible fight, and it is between two wolves.”
“One is EVIL: he is fear, anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.”
“The other is GOOD: he is joy, peace, love, hope, sharing, serenity, humility, kindness, benevolence, friendship, empathy, generosity, truth, compassion, and faith.”
“This same fight is going on inside you, and inside every other person, too,” he added.
The grandson thought about it for a while and then asked, “Grandfather, which wolf will win?”
The old chief simply replied, “The one you feed.”
Author unknown
What we say without words
How many of you have been hurt by something someone said to you without words?
To get you started, I’ll provide a couple personal examples:
Growing up, I was always taller than most kids my age; with my height, came big feet. Although I’m now in my early 60s, I still remember how it felt at approximately thirteen years of age when, while standing in line at a movie theater, an adult looked me up and down and then focused on my feet. She turned to her companion, nudged her, laughed, and held her hands apart, as though measuring the size of my feet. How do you think a gangly self-conscious young teenager felt about that situation?
As a manager for an assisted living/dementia care facility, I wore many hats – especially since the executive director of the facility was extremely ineffective as that building’s director. One day I found myself rushed beyond all measure and needed to get in touch with the Health & Wellness Nurse whom I knew was in the secured dementia wing of the building. I entered that wing at full-bore, with single-purposed intent, ignoring the dazed residents I passed in the hall, leaving a wake of distressed residents behind me. One of those residents somehow caught up with me and grabbed my arm, “What’s going on? Is there an emergency? Do we need to evacuate? Will you help us?” Shame on me. Without a word, I caused aggravation in someone who was the unfortunate recipient of my careless behavior.
How many of you have spoken volumes to someone without saying a word? Did you speak love, patience and comfort, or intolerance, annoyance, and anxiety?
Which would you prefer to receive?
Which would you prefer to offer?
What not to say to someone who is suffering
I was recently encouraged to write about the power of words; not the power of words to heal, but the power of words to harm. Harmful words abound in many arenas, but this article only discusses such words in relation to those suffering from a serious medical condition.
Take it from me – and from others who have experienced the same reaction as me – there are certain “pithy little aphorisms” (a phrase from the article Where Words Fail, Washington Healthcare News) that should be avoided at all costs:
- things could be worse
- time heals all wounds
- I know exactly what you’re going through
- God won’t give you more than you can handle
Let me stop right there. In the article referenced above, the author, Fred Grewe, goes so far as to say that the above biblical platitude is sadistic in nature. Keep in mind, Mr. Grewe is a Board Certified Chaplain and he’s the one who considers that particular bible verse as such. The person who hears it wants to say, “Are you shi_ting me? You mean not only is my health failing greatly, but I’m also failing at what God chose to give me? Where’s the encouragement in that?” Let’s go on. Number 1 in the above list is true, things could be worse than wasting away in excruciating pain with no one there to comfort me in my last few days of life on this earth, but I’m having a hard time coming up with one at the moment; maybe you could come back to me in two weeks. Oh, wait, I’ll be dead by then. I’ll skip over number 2, it rarely brings comfort to the person who hears it.
Number 3 is a selfish, arrogant, misinformed, bullsh_t statement that couldn’t be true even if that very same person was suffering from the very same illness as the one to which that statement was made. Oftentimes, however, the follow-up statement goes something like this, “My dog had cancer too – it was horrible” or “I had the flu last week, I feel your pain.”
If you can’t say something truly encouraging, such as “You’ve got this” – which, by the way, is an effective, worthwhile three-word supportive comment – don’t say anything. That’s right, shut up. If your location prevents you from physically being with the person who is suffering to offer some sort of tangible help or encouragement – by all means, send them a card, but do so without saying something that will hurt or piss off the person who receives it. And consider this idea: a humorous card might actually be the best panacea for that person’s shi_ty day. I’m not suggesting you make light of a person’s suffering, but chances are they’d appreciate something that doesn’t mimic many of the sad, cookie cutter, greeting cards out there.
I say/preach all of the above not because I’ve done things perfectly in my sixty-one years of life – not by a long shot. But I am saying the above because I don’t want people I love, and the people you love, to be on the receiving end of some powerfully harmful words.
Ending life on our own terms
Ending life on your terms | Opinion | The Seattle Times. by syndicated columnist, Froma Harrop.
Being prepared, well in advance of needing to be, will serve you well.
All our lives, we set out on new adventures having prepared for them to the best of our abilities:
- First day of school;
- The start of a new job;
- Preparing for a first date;
- Wedding preparations;
- Organizing a Holiday meal;
- Even something as mundane as putting together a grocery shopping list.
We know how to be at our best, and being at our best means painstakingly and carefully preparing for important events in our life. You didn’t personally have the option of preparing for your birth, but you do have the option, right now, to prepare for your death.
Carpe diem.
What does it mean to end our life on our own terms? This doesn’t have to be a controversial topic. I’m not talking about assisted suicide/right to die matters. What I am talking about, however, is the importance of each of us to spell out in painstakingly and carefully prepared language, all that you want done – or not done – when you are determined to have an irreversible fatal disease.
Death is such a taboo subject.
Why is that? None of us will avoid the inevitable, but many of us avoid laying down our wishes regarding that final time in our lives. The subject matter of the attached article relates to medical insurance companies reimbursing medical professionals for end-of-life counseling provided to their patients. I repeat, this counseling is not controversial. As Ms. Harrop states, “Critics of end-of-life discussions argue the doctors would ‘push’ patients to end their lives prematurely. Why would doctors do that? Where’s the financial incentive in losing a patient?”
The report Dying in America calls on Congress “to end the ‘perverse’ financial incentives that rush fragile patients into invasive medical treatments they’d prefer to avoid.” That being the case, it seems to me that counseling a patient about their dying wishes hurts, more than helps, the physician’s bottom line, so forget the nonsense about doctors encouraging patients to die sooner than later. That’s just hogwash.
“Meanwhile, there’s evidence that for some very ill people, a palliative approach may extend life longer than industrial-strength medicine.” And certainly ones final days without the poison of chemotherapy that has no prospect of curing a cancer, would be far more comfortable than if that therapy had been employed. “In a study of terminal lung cancer patients, the group that chose hospice care actually lived three months longer than those subjected to hard chemotherapy.” Again, that would be a more pleasant exit from this life than suffering the ravages of a chemo treatment that is not curative in nature.
“An end-of-life talk with a doctor spells out the options. Patients can use it as a basis for filling out an advance care directive – a form listing which treatments they would want or not want.” And let’s not forget that such a document only comes into play if the patient can no longer speak/express his or her wishes regarding their care. An advance care directive is a legal document and as such, spells out when it can be put in motion, and when it can not. If ever there’s a time when you can benefit from being a control freak, your final days is it.
This legal document is not just for the older population.
Once you’re considered an adult, you can decide what you want regarding your life. Don’t wait until it’s too late and someone else decides medical matters without your input.
Very Inspiring Blogger Award
Humbled, grateful, overjoyed! Not just because I was nominated for the Very Inspiring Blogger Award, but also because I’ve inspired someone, hopefully many someones. Talking to a wall is not a very gratifying experience; if my blog is merely an electronic version of that, I will have not reached my objective: to help, encourage, and lighten your load while on this aging journey. Thank you Kay for the nomination!
Kay Bransford of Dealing with Dementia nominated me for this award. If any of you readers have yet to follow Kay’s blog you need to get to it. I will nominate several bloggers for the same award, following the Rules provided below:
- Thank the amazing person who nominated you and provide a link to their website;
- List the rules and display the award;
- Share seven facts about yourself;
- Nominate 15 other blogs and comment on their posts to let them know they’ve been nominated. I failed at listing 15, not because the blogs I follow aren’t worthy, but because my blog-following count is a limited one;
- Proudly display the award logo on your blog and follow the blogger who nominated you.
Seven facts about myself:
1. I’m not ashamed to say that I’m a Baby Boomer and have been for awhile. Turning sixty was easy, however it got a wee bit more difficult at sixty-one …
2. I was born in Pasadena, California and have lived a great length of time in Los Angeles, California; Honolulu, Hawaii; Anchorage, Alaska, and the greater Seattle area of Washington State – my current and final home.
3. My favorite people – other than my loved ones – are anyone older than me – preferably senior citizens who’ve claimed that title for quite some time. This third fact about me directed most of my worthwhile adult career and volunteer pursuits: senior housing industry manager, Alzheimer’s Association caregiver support group facilitator, and Certified Long-Term Care (LTC) Ombudsman for the State of Washington.
4. I have posted over 480 articles on my blog since starting it in 2011.
5. I am currently writing a novel that focuses on the caregiving challenges faced by those who are the primary caregiver for a loved one. Through real-life stories, the reader will learn more about the disease and its effect on everyone it touches. My hope is that by putting a face on this disease – showing what it looks like in everyday life – more interest will be generated to prevent, treat, and cure Alzheimer’s disease, a disease that is always fatal, and for which all of us are at risk.
6. I have three daughters (one of my own and two of my husband’s) and two sons-in-law (one who married my own daughter and one who married my husband’s youngest.)
7. My family tree: I have two siblings, an older brother and sister. My father died from Alzheimer’s complications in October 2007 at the age of 89; my sister-in-law died of the disease in the summer of 2012 a few months before her 70th birthday9.
And that’s why I do what I do.
Nominees for Very Inspiring Blogger Award:
Mary Riesche Studios, Vacaville, California. This artist has drawn and painted since she could hold a pencil. She has tirelessly pursued her craft through every chapter of her life. She raised four children while her husband was in the military – living numerous places in Europe and the U.S. as a result – and that never stopped her from painting. When her four children were out of the house, she and her husband adopted a teenager from Russia, bringing the number of children to five. She’s a trooper, to say the least. It took her a while to have an empty nest. I hope you’ll visit her site to see a representation of the type of work she produces.
Catching Up to the Disease, by blogger, Don Desonier. The subtitle for this blog is Transitions in Dementia Caregiving. Don’s wife died of early-onset Alzheimer’s at the age of 69 on July 4th, 2012. This blogger knows something about being a dedicated, committed caregiver, and on top of that, he excelled at being the very present advocate for his wife of 25 years.
Dementia Poetry is an in your face journal of a daughter-in-law’s disease journey with her mother-in-law, in the form of extremely well-written poems. The subtitle for her blog is: The Politically Incorrect Alzheimer’s Poetry Blog.
Theresa Hupp’s blog, Story and History, is a moving journal of a family’s life covering past, present, and future. But that’s not all: Theresa is a fabulous, published author. I’d say I’m jealous, but friends, and that’s what I consider Theresa, don’t turn green with envy – at least they shouldn’t. Theresa, you nominated me for the Versatile Blogger Award in February of 2014, but I already received that award a couple years ago so I’m not going to claim it again, but I thank you profusely for nominating me.
Not My Original Plan, a blog written by a woman in her thirties who is the caregiver for her mother who has dementia. This is a very inspirational blog – how fitting for this award! – and I strongly suggest you check it out and follow it ASAP.
Not Quite Old, by blogger and author, Nancy Roman. The subtitle for her blog is Gracefully Aging with Resistance. The way Nancy writes – filled with extraordinary humor, will keep you engaged and wanting more.
Let’s Talk About Family. Lori’s blog family history starts with her mother’s failing health and death, and continues with her father’s life as a widower who eventually moves into an assisted living facility (ALF). Her blog is one that I never miss. You know how you can manage the notifications you receive so that you get a notification e-mail immediately, daily, or once weekly? Her blog is one of those that I receive immediate notifications – I can’t wait any longer! is the way I treat her blog. If you are not yet following Lori’s blog, get to it!
Jill Weatherholt, Pursuing a Passion for Writing, is a site that inspires me because while working full-time, she’s still committed to writing and what she writes is well-worth reading. Thank you, Jill, for being an online inspiration to this aspiring author. Jill started the blog to create a community for other new writers and shares her publication journey – something all wet-behind-the-ears writers need to read and be encouraged by.
10 Legs in the Kitchen is a fabulous cooking blog but a whole lot more. Stacy’s anecdotes add “meat” to every posting and provide humor and insight, not just darn good recipes. I met Stacy at a writer’s workshop in Seattle.
Yellow Mum Blog, by Wendy in the United Kingdom, documents the loss of her mother to cancer, ten weeks after diagnosis. What she writes is a journal, but in many respects, it is a guidebook for the rest of us in our grief.
A Swift Current, Letting our Parents Go, Hallie Swift’s blog is one to which many will relate. Whether your parent’s departure is a gradual one – such as is the case with Hallie’s mother due to dementia – or a sudden departure by way of a fatal accident, letting go is hard to do – oftentimes more painful that we believe we can handle.
Is your doctor an enabler?
Consider the prescriptions in your medicine cabinet/pill-minder box. Is one of those medications something that your doctor renews over and over again for you? How about that something-or-other that seems innocuous enough because you take the lowest possible dose?
Are you like many of us out there who struggle to fall asleep? The anxiety of worrying about whether or not you’re going to fall asleep being a sufficient reason for your doctor to prescribe a benzodiazepine to help you along the way? When did you first tell your doctor about your sleep struggles and how many months or years have passed since he or she prescribed a measly dose of Ativan, Valium, Xanax or Klonopin?
Each time the refill runs out and you call your doctor to renew the prescription, does she do so, even without meeting with you in person to discern whether or not it’s still needed? Your doctor is an enabler.
Your doctor might be putting you at risk of developing Alzheimer’s disease. That itsy bitsy dosage you take nightly for months and years on end? It’s not a harmless prescription if it gives you a fatal disease – which Alzheimer’s is.
Now that you’re aware of the risk, make sure your doctor is aware and don’t let him or her poo poo that risk; instead, ask her to wean you off that medication so that you can have control over this one potential cause of developing a disease that you absolutely do not want to get.
You’re in charge, not your doctor. Don’t assume that her constant renewal of such medication means it’s okay. You’re an informed patient now; it’s time you took steps to remove this Alzheimer’s risk from your life.
Blogging Award: a very tardy response
Did you ever get so busy that you received an award and didn’t go pick it up, and then you forgot that it was waiting for you? That’s me. Lori, one of my most favorite bloggers, has been writing her blog Let’s Talk About Family since December 2011. This fabulous person nominated me for the Best Moment Award in May of 2013. All I can say is that not “picking up” my award qualifies me for the Worst Moment Award, but I’ll try to make up for it with this post.
Lori’s blog family history starts with her mother’s failing health and death, and continues with her father’s life as a widower who eventually moves into an assisted living facility (ALF). Her blog is one that I never miss. You know how you can manage the notifications you receive so that you get a notification e-mail immediately, daily, or once weekly? Her blog is one of those that I receive immediate notifications – I can’t wait any longer! is the way I treat her blog. Thank you so much for opening up your life to us in the blogging world.
Rules for the Best Moment Award:
Winners post information about the nomination, thanking the person who nominated them, with their acceptance speech that can be written down or video recorded.
Winners have the privilege of awarding the next awardees (see below) The re-post should include a NEW list of people, blogs worthy of the award, and winners notify them the great news. Winners should also post the award badge on their own website.
What makes a good acceptance speech?
Thank the people who helped you along the way, be humorous if you can to keep the reader entertained and smiling. Provide inspiration that helps your story to touch the lives of others.
And here’s mine: I’m thrilled to be acknowledged as having something good to say from time to time. I don’t think I’m an excellent writer, but I do have lots to say and I’m quite willing to write up a storm. I’m the youngest of three siblings and the only one of us who has been involved in the lives of senior citizens – and everything that involvement implies – for close to two decades. I’ve always loved people older than me; I guess it gives me comfort knowing that I’m younger than someone else. My official responsibilities over the years involved: working in the senior housing industry both in the corporate environment and in assisted living/memory care facilities, being an Alzheimer’s Association caregiver support group facilitator, and a Certified Long-Term Care (LTC) Ombudsman for the State of Washington (an advocate for vulnerable adults living in LTC facilities.) I’m retired from active work but I am actively still involved in being an advocate for the vulnerable by writing my first novel – a project I hope to complete by end of this year. My novel focuses on the lives of family members who care for a loved one with Alzheimer’s or other dementia.
My nominees for the Best Moment Award are:
Kay Bransford, for Dealing with Dementia. The reason I enjoy Kay’s blog is best described by her blog’s subtitle: A family caregiver’s journey to deliver loving care with grace and humor. We all know there is absolutely nothing humorous about Alzheimer’s or other dementia, but humor can be found in the human interactions between caregiver and family member. If you look for them, you will find them. Kay, I’ll be posting my acceptance of a different award you recently nominated me for very soon. THANK YOU!
Dementia Poetry is an in your face journal of a daughter-in-law’s disease journey with her mother-in-law, in the form of extremely well-written poems. The subtitle for her blog is: The Politically Incorrect Alzheimer’s Poetry Blog.
Theresa Hupp’s blog, Story and History, is a moving journal of a family’s life covering past, present, and future. But that’s not all: Theresa is a fabulous, published author. I’d say I’m jealous, but friends, and that’s what I consider Theresa, don’t turn green with envy – at least they shouldn’t. Theresa, you nominated me for the Versatile Blogger Award in February of 2014, but I already received that award a couple years ago so I’m not going to claim it again, but I thank you profusely for nominating me.
Reflections on Dementia, Caregiving and Life in General is a must-read blog all the way from Singapore. This blogger takes care of her mother who has Alzheimer’s and vascular dementia. Her insights and her view of her world will engage you from the very first posting you read.
Dead Inside
What a horrible title for an article.
It’s also a horrible concept, don’t you think?
But many with dementia are dead inside without any means of engaging with others in meaningful conversation. Heck, they might not even be able to talk to themselves: a practice I engage in quite frequently.
What an isolating state to be in: you’re there, but not there.
Fortunately, those with Alzheimer’s, dementia, or other cognitively restricting illnesses, have a chance to awaken their memories – and therefore their history – but not without the tools to do so. Alive Inside, the 2014 Audience Award winner at the Sundance Film Festival, is a one and a quarter hour documentary film that touts the benefits of personalized music therapy for those who are living dead inside.
Dan Cohen, social worker, Founder and Executive Director of Music & Memory, started this awakening project several years ago. Here is a description of the project, taken from the film’s website: “Music & Memory … promotes the use of digital music players with individualized playlists to improve the quality of life for elders, regardless of their cognitive or physical status … Dan has spent most of his career helping individuals and organizations leverage technology. Music & Memory operates in hundreds of long term care homes across the U.S. and abroad.”
Watch the 2.15 minute trailer on the provided Alive Inside website to witness a few of the individual awakenings spotlighted in the film.
Even if the film is not scheduled to appear in your area, you are still able to help awaken the millions of people in the United States and abroad by your participation in Mr. Cohen’s project. Whether it’s feet on the street or a click of a mouse to donate funds, each of you can become a part of these efforts.
Additionally, if you know someone, or are caring for someone with cognitive decline, put together a personalized database of music for that someone in a digital music storage device, then connect them to it with a set of headphones. You might be able to awaken him or her with that simple effort on your part.
The tethered caregiver
Imagine that you are the primary family caregiver for a loved one with dementia in your home. You have no time to yourself while in the house so how can you possibly find the time to leave your loved one alone to complete some pressing errands?
But you do leave the house and you do leave your loved one alone at home, because you haven’t figured out how to get someone else to do those errands for you, or you don’t know how to secure someone else to watch your loved one while you do the errands. I favor the latter option because a 24/7 caregiver absolutely must get out of the house and feed her soul while crossing items off her To Do list.
I went to Staples office supply store yesterday to pick up three items for my writing quest: a new thumb drive that I can trust to store my magnificent masterpiece of a manuscript; a new mouse pad because my right wrist and hand have worn out the previous one; and a ream of lined filler paper for taking notes and drafting new ideas.
Because it is currently back-to-school shopping time, Staples was crazy-busy yesterday. The checkout line was very long and directly behind me was a young mother with a shopping cart filled with supplies for her two school-aged children. An older woman with two items asked if she could please go ahead of her because she had a sick husband at home; the young mother graciously agreed to let her do so. When it was my turn at the register, I turned to the older woman and asked her to go ahead of me to which she responded, “Oh thank you so much, you see I have a situation at home and I need to get back quickly.”
Have any of you been there – done that?
Do you know someone who has?
The following advice goes to those of you who know someone in a similar predicament as the woman at the Staples store: be the respite that person needs. Don’t wait for them to ask for help – they won’t ask you; you must make the first move. Put yourself in that someone’s shoes and imagine racing through your errands, all the while freaking out wondering what’s going on in the house while you’re away: the person with dementia wandering away from the house or falling down in or around the house, turning on the stove or running the water without turning either off, or letting someone inside the house who should not be inside the house.
Now it’s your turn: imagine the worst-case scenario and apply it to this situation.
Now do something about it.
Other articles to inspire you:
Solo Caregiving; Helping an Alzheimer’s Caregiver; Caregiving: Grief, Guilt, Exhaustion, and Discrimination
Downsizing our lives
Boomers need help dealing with their parents’ ‘stuff’ | Business & Technology | The Seattle Times. The attached article by Sacramento Bee reporter, Claudia Buck, provides sage and practical advice for those who are downsizing a parent’s belongings when said parents move into a senior housing environment, and for those who are dispersing the parental belongings after their death. Please read Ms. Buck’s article; it contains extremely useful information.
The following list gleaned from the article provides a few suggestions worth your consideration:
- When you set out to eliminate stuff from a residence, don’t get rid of the memories in the process. Once you’ve dispensed with the goods, you’ll never get them back again. My mother died in her sleep – no one in the family expected it or prepared for it. After the funeral event had passed and my brother and sister had returned to Washington and California, I remained to help my father with a massive downsize of his house. There were obvious sentimental items that were boxed up for later, but for the most part, we stuffed large Hefty bags with items and placed them into two piles: donation-worthy, and garbage. Not a bad idea, actually, but we didn’t pause long enough to properly discern what should have been kept. With both parents now deceased, us three adult kids have far too few tactile sentimental items in our possession.
- Creating a shadowbox of the most precious mementos. Having read the attached article, I’ve decided to create a shadowbox of the few items remaining from my parents’ lives so I can reminisce at the sight of them. One thing is for certain: containers full of sentimental nick nacks stacked in a closet do not honor a memory.
- If you absolutely know that some of the nicer items will not be enjoyed by your household, give them away or donate them so others can. Look at it this way, your and your parents’ legacies will live on in the lives of others. Not a bad consolation if I do say so myself.
-
My family in the 70s. I no longer have that red dress but I do have those earrings my mom is wearing. If at all possible, prior to any parent’s death, document the items that are meaningful to each family member. You’ll be glad you did. Within three months of my mother’s death, my father moved into an independent living senior community taking with him the bare necessities of furniture and kitchen items, as well as the aforementioned sentimental items that he and I had boxed up earlier. As he aged, he wisely decided that the next time each of us kids visited him, we would designate which items we would most like to inherit at his passing. Dad documented our wishes, and when he died all I had to do was retrieve the list from his files and distribute that which us three kids were interested in. Sure, conflicts can arise, but a little give and take go a long way towards preserving the value of each memory.
- Speaking of taking steps in advance, what about you? Do you have clothing you haven’t worn in more than a year and probably won’t wear in the years to come? How about household items for which you have duplicates? Is there any chance whatsoever that over the years you’ve acquired items that could be re-purposed, donated, or tossed?
I’d say with 100% confidence that you have belongings that you no longer use or need.
Donating to charity is very commendable because it’s always a good thing to provide for those who don’t have the means.
And just think of all the room you’ll gain in your closets once you’ve successfully downsized your life by adding to the lives of others.
Don’t take selfies in Auschwitz | Opinion | The Seattle Times
Don’t take selfies in Auschwitz | Opinion | The Seattle Times by Leonard Pitts, Jr. One would think that it is not necessary to publish rules or guidelines as to when or where it is inappropriate to immortalize your grinning mug via a selfie, but Mr. Pitts clearly indicates that such guidelines are necessary. His column, attached above, tells the story of an Alabama teenage girl who took a “sunshine smile” selfie at the place that has been memorialized as the largest concentration and death camp in the world: Auschwitz, also known as Auschwitz-Birkenau. (After much fanfare over social media and elsewhere, this young lady defended her action by stating that it was meant to honor her father – on the anniversary of his death – because he passed his love of World War II history on to her.)
Keep in mind, Mr. Pitts’ column is an Opinion piece.
I happen to agree with him.
It is my opinion that it is not appropriate to take a stupid-ass smiling, self-absorbed, thumbs up, V cooties sign above someone else’s head, sticking-out-your tongue selfie or photograph in the following incidents and/or places (this is just a partial list):
- Auschwitz: a place where 1.1 million humans were tortured and murdered;
- 9/11 Memorial: where nearly 3,000 human beings were killed by terrorists;
- Vietnam Veterans Memorial: where names of the dead – 58,286 as of Memorial Day 2013 – are memorialized, 1,200 of which are designated as MIAs, POWs, and others;
- At scenes of destruction such as someone’s neighborhood post hurricane or burning into non-existence from a forest fire (your selfie of non-involvement documenting your presence there is disrespectful to those who have lost everything);
- At evolving crime scenes, such as the one that took place outside of a New Jersey McDonald’s restaurant (Mr. Pitts wrote an Opinion piece on that incident as well, see attached link, to which I also agreed) where one female employee beat up another female employee and while no one intervened to stop the violence, they did take photos and videos and oohed and ahhed at the unfolding action; and finally,
- It is not appropriate to take a selfie in front of a corpse peacefully laid to rest in a coffin at a viewing service.
Which begs the question: did this Alabama teenager take a selfie in front of her father’s open casket (if a casket was used and if it was open)? I would bet that she did not. Why? Because it would be disrespectful, distasteful, and inappropriate. But I have a confession to make. My family is somewhat guilty of the latter.
My mother died on September 24, 1994 leaving my father a widow. Within 24-hours of her death, I and my two siblings arrived from out-of-state to support dad and help him with the numerous required tasks leading up to the funeral. Mom was cremated.
Because the entire family was present at the church funeral, including my sister-in-law and my adult daughter, someone suggested that we all stand around the urn (which sat on a table surrounded by six dozen pink roses at the front of the church) and have our picture taken.
At the conclusion of the service, our photo was taken. It is a very awkward photo, evidenced by the strained smiles on our faces. The inner dialogue went something like this, “Someone is taking a photo; you’re always supposed to smile for a photo; ergo, here’s my smile.”
But dad wasn’t smiling. He just lost his bride of forty-seven years; what’s to smile about? He stands there with an exhausted and grim look on his face, his left hand touching the top of mom’s urn: one last connection with her before the undertaker removes the container for appropriate storage.
I’m not showing you that funeral-day family photo because there’s no reason why you need to see that private family moment. More importantly, that photo op just didn’t feel right to me.
Maybe that’s a pretty good barometer from which to gauge the appropriateness or not of our actions.
Helping an Alzheimer’s Caregiver
Want To Help Someone Who Is an Alzheimer’s Caregiver? Here Are Some Tips.
Attached is a very worthwhile read by blogger, Kathie Ritchie. The article includes her suggestions as well as those of caregiver adviser, Marie Marley. (Note: the links provided for Marie Marley appear to be broken, but Kathie includes Ms. Marley’s input within the body of her own blog article, making the content easily readable.)
Additional articles that will provide information and suggestions to non-caregivers on how they can help their neighbor, co-worker, besieged family member:
- Caregiving: Grief, Guilt, Exhaustion, and Discrimination;
- Solo Caregiving;
- Caregiving: The Ultimate Team Sport
The above will give you more than enough material to provide readers with helpful suggestions. If you don’t take the time to read the attached articles – and I sincerely hope you do – I’ll leave you with one suggestion that I hope you do follow:
If a caregiver doesn’t ask for help while on his or her caregiving journey, don’t assume they aren’t in need of your assistance. Offer specific assistance to them; don’t force them to come up with a suggestion on how you can help.
Examples: “I have some individual frozen leftover meals I’d like to bring over for your household, what’s a good time for me to drop them off?” or “I’m headed to the grocery store, what can I pick up for you?” or “It may sound crazy, but I enjoy working in the yard. I’ve completed my Spring yard cleanup, I’d like to come over and help you with yours.”
Like Nike says, “Just do it!”
Spineless inaction: the bystander effect
Courageous or spineless? Our actions, or inactions, decide | Opinion | The Seattle Times.
“Someone else will step in.”
“My God, this is horrible; someone should really do something!”
That someone is you and me.
In the attached article from today’s Seattle Times newspaper, Pulitzer Prize winning columnist, Leonard Pitts Jr., poses a question that all of us should readily be able to answer. If you see someone in need of help, do you wait for someone else to do the right thing, or do you step in? Do you need to look to other people, watching the same emergency situation as you, to receive the correct “cue” as to what is required of you? No, each of us should assume that if I don’t help this person, no one else will. That’s what Martin Luther King Jr. encouraged us to do when, during one of his speeches, he relayed the story of the Good Samaritan from the Bible.
Pardon my paraphrase, but his message went something like this:
When I happen upon someone in obvious need of assistance, instead of hesitating and wondering what will happen to me if I render assistance, I should be asking myself, “What will happen to this person if I don’t stop and help?”
Some needs are obvious as detailed in one of the stories in Mr. Pitts’ article: Just outside of a New Jersey McDonald’s restaurant, a female McDonald’s worker was savagely beaten by a co-worker who was upset because the other woman gossiped about her. During the beating, no one stepped in to help. While the crowd exclaimed over what they saw – and even took photos and videos of the beating – the only person who came to this victim’s aide was her two-year old son who did what he could to get the mean woman off of his mommy. Not one person at this McDonald’s eatery called 911. I encourage you to read Mr. Pitts’ account to learn the outcome of this story.
Some needs aren’t as evident: in the heat of a summer’s day, you see an elderly man walking down the street when you leave the house to do some errands, and on your return trip a couple hours later, this same elderly man is sitting on a boulder at the side of the road – a bewildered look upon his face. That’s when you need to trust your gut. You say to yourself, “This isn’t right. This guy must be lost and most certainly could be dehydrated,” and so you pull over the car. I wrote an article last summer on this very subject matter, Trust your gut!, resultant from an experience that reinforced my belief that if something feels wrong, it is wrong.
Whether a need is obvious or not-so-obvious, you’re the someone who needs to step up to meet that need. Life is too precious to be an apathetic bystander.
R.B. Bailey Jr.’s Blog – A site you all should visit
R.B. Bailey Jr.’s blog comes close to being a one-size fits all website because of its inclusion of multi-facted and varied postings that attract the viewing needs of a broad population.
I hope you’ll visit – and even follow – his site. It deserves to be in your Favorites folder.
Nancy’s Independence Day
Two years ago today, my sister-in-law died from Alzheimer’s disease.
Four and a half years post diagnosis, Nancy Satterberg Desonier was liberated from the cognitive chains that stifled her creative and loving essence, and dramatically shut down her stately and classic physical body.
Another thing happened on July 4, 2012: Nancy’s caregiver husband, my brother Don Desonier, lost his bride of almost 25 years. Don didn’t feel liberated – he would have gladly continued on his wife’s disease journey as the supportive and attentive husband that he was – but he could celebrate the fact that this devastating disease was done robbing he and Nancy of a quality-filled life, and he could take comfort in the fact that his wife’s suffering had come to an end.
I celebrate Nancy today and the thousands upon thousands like her whose lives were cut short by Alzheimer’s and other dementia.
I also celebrate my brother Don and all the caregivers who provided loving support to a loved one who has passed from this disease. You are a hero to many, and you are a hero to me.
Teenage advocates against Alzheimer’s disease
Alzheimer’s Foundation of America Teens (AFA Teens) brings hope that is sorely lacking from the Alzheimer’s medical community. The younger generation is doing something that many of us older adults are not: bringing more awareness to a disease that most of us have been exposed to, either peripherally or specifically. “AFA Teens, founded by a teenager, seeks to mobilize teenagers nationwide to raise awareness of Alzheimer’s disease, and to engage, educate, and support teens and their families.”
As adults, we are affected because the person with the disease is our spouse, partner, sibling, or older relative. But what about the cousins, nephews and nieces, children, and grandchildren out there? Children and teenagers are also exposed to this disease. The challenges faced by teens who are actively involved with these relatives – living close enough to have frequent interaction with them – are challenges that adults have a hard time grasping.
“How come Pappy doesn’t recognize me any more?” “Why does mom always forget the things that are important to me – like my birthday!” That’s right; some teenagers have mothers or fathers with early-onset disease. What should be one of the most exciting times in their young lives is instead spent as a co-caregiver with their other parent. (I addressed this unfortunate family dynamic in my article, Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia.)
I strongly encourage you to visit the AFA Teens website. I know you will be encouraged by the efforts being made by these young advocates.
Do you have an Advance Healthcare Directive?
A NY Times article, When Advance Directives are Ignored, paints a frustrating picture of how and when the best laid plans can come to naught. I am an absolute, card-carrying advocate of Advance Healthcare Directives, also known as a Living Will. I am more concerned about people dotting their i’s and crossing their t’s while preparing their last healthcare wishes, than I am about what people want done – or not done – towards the end of their lives.
You see I couldn’t care less whether you wish to extend your life at all costs – allowing all heroic methods to be employed while on your death bed to take advantage of every second of life available to you – or you simply wish to be made comfortable with the usage of palliative measures while you transition from this life to the next. What does matter to me, however, is that you secure those wishes in a binding legal document while you’re still able to do so. (I am not a lawyer; I am a daughter whose mother and father gifted their three children by laying out their final wishes on paper years in advance of the end of their lives.)
I’ve written four articles addressing this topic in the past few years. I hope you will peruse them, especially if you’ve not yet taken steps to prepare for your exit from this life in the manner in which you choose.
- Cost of Dying: planning for a good death
- Alzheimer’s and other dementia: Advance Directives
- A difficult but necessary conversation
- The Gift that keeps on giving
June 21st: The Longest Day Alzheimer’s Style
The Longest Day. The attached article by Author, Ann Hedreen, can be found linked above, and you can find additional well-written articles on her blog The Restless Nest. Reader alert: Ms. Hedreen’s book, Her Beautiful Brain, will be released September of this year.
What was your longest day like?
Was it long, because it was fun-filled and absolutely fabulous, or was it long because the day was crammed with the most difficult and stressful experiences of your life?
Caregivers: you are heroes to all who understand the job that you’ve taken on as carers for your loved ones. You live the 36-hour day with all of its burdens and insurmountable challenges, while across the United States there’s much discussion – even controversy – over raising the minimum wage. In contrast, there you are earning no wage but working harder than you’ve ever worked before.
Loved ones with Alzheimer’s or other dementia: your disease-controlled days might seem to have no beginning or end; you go about your day trying to fulfill its challenges while perhaps being at the stage in your disease where you are still able to feel the frustrations of not grasping the how-to of tasks that prior to your diagnosis required no complex thought processes on your part.
Those who have yet to be intimately involved in the above-mentioned roles: look around you – you won’t have to look far – and then on this year’s longest day, Saturday, June 21st, do what you can to help the co-worker or neighbor who desperately needs your help but doesn’t know how to ask for it, or is too ashamed to admit that they can’t do it all.
When you offer help, please don’t leave it open-ended. Instead of saying to your neighbor, “Hi yah, Joe. Be sure to call me if you need anything,” be more specific so it’s easier for Joe to accept your offer, “Joe, when I get out my lawnmower this weekend, I’d love to swing by your place and take care of your lawn so you won’t have to.” Or how about, “Yah know, we’re always making more food than we can eat at our house so we just freeze the leftovers for another time. Can I come by later this week and give you a week’s worth of meals so you don’t have to concern yourself with what to fix for dinner?”
And then keep it up because your neighbor or co-worker’s life isn’t going to get any easier. Keep offering tangible ways in which to provide assistance and you’ll go a long way towards making the longest day – which is every day in the life of a caregiver – a bit easier to tackle.
Happy Father’s Day Dads!
Maybe my father and father-in-law can see this from Heaven, maybe they can’t, but I’m still gonna post it in their honor. The two photos I’m posting are from February 10, 2000 on my wedding day to my fabulous husband, Jerry.
This is my favorite photo from the day. Dad was very happy that I had finally found someone like Jerry. Dad VERY much approved of my choice.
I apologize that the next photo is kind of milky. I chose it, because it meant so much to both of us to have Stewart in that place of honor.
Are you facing an insurmountable task?
That’s how our household’s latest project presented itself – at least from the outset.
My husband and I live in a rural suburb of Redmond, Washington. Because we’re rural, a sewer system is not feasible, so all the houses in our area have a septic system: septic and pump tanks fairly close to the house, a drainfield as far away as possible from the house. Our house’s system was installed in 1989 – the drainfield recently failed – and now it has to be replaced.
Dilemma: A 50 year old multi-trunked Maple needed to come down, as did a few Alders and a Cottonwood. Trees have roots, and those roots gravitate towards moisture, regardless of the source. We so wanted to keep those trees, but one cannot live without a septic/sewer system so we had to do what we had to do.
Monday and Tuesday of this week saw the professionals doing the deed, with my husband and I, and our neighbor Bob, taking on the task of turning a pile of tree trunks into logs suitable for a fireplace. Our neighbors Bob and Patty use a lot of firewood and our other neighbors, Irma and Larry, do as well. Rather than have the tree professionals remove the massive trunks, we wanted to be able to “recycle” it and providing it to our neighbors is what we wanted to do.
I’ll admit that my hubby and I have been under lots of pressure since we discovered the drainfield failure back in April. And now having a pile of wood that needed to be reduced to logs in less than seven days’ time freaked us out – okay, it freaked me out – but freak out or not, it sure looked like an insurmountable task, and a painful one at that.
It’s not insurmountable any more, but it’s still painful.
Just as is needed for every large task with which we are confronted – whether a complicated office project, a weight loss plan, or what have you – if you break it down into manageable steps, the project will be completed. That’s what we did, and as of the end of yesterday, what was insurmountable now appears to be doable.
Yesterday, my daughter Erin came to the house at around four o’clock after teaching her Junior Achievement class in Seattle. My hubby came home shortly thereafter and within two sweaty and painful hours: Jerry had made a dent in the pile of wood by cutting it into manageable logs and Erin and I had hauled multiple wheelbarrows full of small and HUGE logs to various locations where wood needed to be distributed. Now the remaining task actually seems palatable. An aside: that daughter of mine is such a stud – you should have seen the massive logs she lifted off the ground and tossed into the wheelbarrow. Ugh. One thing for sure is that all bodies involved in this project have not needed to do any extra workouts this week!
The moral of the story: when presented with a large task, allow yourself to freak out, then calm down, break the task into smaller chunks, and get to it. That’s what we did and I just know that eventually – but before the drainfield system is installed the beginning of next week – we will have made those massive trunks into usable logs, and all will be well.
Fahrenheit 451 – sort of
The 1953 Ray Bradbury novel, Fahrenheit 451,depicts a future American society where books are outlawed and those that are found are destroyed by fire via that society’s “firemen.” The premise of the novel has been described as representing the suppression of dissenting ideas from those deemed correct and appropriate: censorship at its worst. This blog entry is not about censorship; it is about the possibility of losing the tactile, hard or soft cover media that has entertained billions of us over the years: the non-electronic book.
I crave books and I am never without a selection from which to choose,
but maybe the vehicle by which I read books – and that so immediately satisfies my hunger for more books – will bring about the demise of the tactile tome.
I’m talking about e-readers.
From June 3, 2010 through June 8, 2014, I have spent just under $3,000 on e-books. If that shocks you, imagine how I feel seeing that number because I have to admit it doesn’t feel like thousands of dollars when I download a new book in less than a minute. I purchased books now and then prior to purchasing my first e-reader four years ago, but most of my reading addiction was satisfied compliments of the local library system.
Caveat: I can justify a certain percentage of my e-book purchases by telling you that quite a bit of the research I perform for my writing career comes from fiction and non-fiction works that focus on aging – most specifically on Alzheimer’s and other dementia. But even I will admit that it’s a very small percentage.
I would gladly give up my e-reader if doing so saves soft and hard cover books.
One of my family members stopped using his e-reader; he lost the passion for reading – or more accurately – he found it difficult to find a book he could dive into. He kept going from book to book and nothing he read captured his attention. He had a light bulb moment, however, when he discerned that the content he was reading was not lacking, it was the electronic apparatus that was at fault. I’m not parting with my e-reader yet, but the anxiety I have been feeling the past couple months haunts me each time I pick up my e-reader and swipe the page from right to left, instead of lifting the top right corner of the page and laying it down on the left.
Sarah Jio’s most recent novel, Goodnight June, hints at what has already occurred and might very well occur completely: an absence of book stores and readers to keep them in business. Another voiced concern in Goodnight June is that the childhood love of reading is waning.
What do you see children doing when they have free time? Do they pick up a book like so many of us did when we were their age or are they cozying up on the couch with an electronic device?
Is it just me? What are your thoughts?
Grandparents are cooler than you think!
Alternate title: Grandchildren are cooler than you think!
I believe grandparents and their grandchildren have quite a bit in common. Just because many years have passed since a grandparent or great-grandparent was born doesn’t mean that there aren’t any similarities between then and now. Here’s an example of what I mean, a quote that appeared in the Atlantic Journal:
The world is too big for us. Too much is going on. Too many crimes. Too much violence and excitement. Try as you will, you get behind in the race in spite of yourself. It’s a constant strain to keep peace – and still, you lose ground.
Science empties its discoveries on you so fast that you stagger beneath them in hopeless bewilderment. The political world now changes so rapidly, you’re out of breath trying to keep pace with who’s in and who’s out. Everything is high pressure. Human nature can’t endure much more.
An amazing sentiment that appears to reflect what’s going on right this very minute in the world in which we live. It was published on June 16, 1833, almost 181 years ago. The pervading feelings of the time are almost indistinguishable from what is in the minds of people today. Isn’t that amazing?
Let’s look at a few common items that have changed over the years. These items were used at one time but have vanished in the past several decades – or have they?
Telephone answering machines – earlier answering machines used cassette tapes, with later versions performing the same function, albeit digitally. Answering machines still exist in the form of modern voice mail retrieved from home phones and/or cell phones.
Telephone directories/books – very few households rely on a 500-page phone book because they can now look up names and businesses on their computer or Smartphone. But phone books still exist – they’re just “housed” differently.
Printed encyclopedias – the final print edition for the Encyclopedia Britannica – a 32-volume set of books – was released in 2010. How did I find out that information? In one of today’s on-line encyclopedias of course: Wikipedia.
Floppy discs & drives – many children under the age of fifteen have never seen this storage device. You’d be hard-pressed to find any newly-released desktop or laptop computers with this type of storage capability. But storage devices still exist in the form of a thumb/flash drive or the “Cloud.”
Rolodex – some of us remember, or still have, a box or carousel version of a Rolodex. But we still own something that holds all our Contacts: our address books contained in our e-mail program and in our cell phone contact list.
Photographic film – I saved a roll of unused Kodak film. Since this product is no longer made, it may be worth something some day! Photos are still being taken, but instead of being developed and placed in a multi-paged album, most of the time these photos remain in our camera or phones, or they end up on social media sharing websites – the new type of photo album.
What I’m attempting to point out is that in many respects, grandparents and their grandchildren are performing the same functions as their younger & older age group, but the manner in which they do so is very different.
Grandparents and grandchildren are different – but the same. Establishing a common ground – and minimizing the differences between the two groups – can open the door to increased understanding and communication amongst the generations.
Theological bullying
Forced faith is not faith | Opinion | The Seattle Times. The syndicated columnist, Leonard Pitts Jr., has proven yet again how fabulously he writes. His writing can only attain that quality, however, if what he writes comes from a sense of justice, compassion, and truth. Therefore, hands down – his writing is fabulous.
The title for this blog piece comes from Mr. Pitts’ article where he quotes Martin Luther King’s definition of faith as being, “taking the first step, even when you don’t see the whole staircase.” The columnist says that given what the Sudanese Parliament has done by imposing the death penalty on one of its citizens who wouldn’t disavow her faith, “faith has less to do with hope and assurance and the courage to take steps in the dark, than with justifying just this kind of theological bullying.”
This story centers around choosing one religion over another. My writing on this story does not pit Christianity against Islam, (or vice versa) rather, it’s a story showing a conflict between two religions that very well might end horrifically. It’s a dramatic story because the “guilty” party, Meriam Yehya Ibrahim, a mother of two who married a Christian man, will receive 100 lashes and then she will be killed after her youngest child has been weaned – nothing short of outrageous and barbaric.
Can you require/force someone to have faith?
Can you require/force someone to love you?
Mr. Pitts asks:
Can faith ever truly be faith if it is imposed by force of law or threat of violence? Is faith faith if it is not freely chosen? If someone swore at gunpoint that she loved you, would you believe her?
The Sudanese Parliament has no concept of what faith is. Again, I’m not talking about Islam in general, I’m talking about the actions of the Sudanese Parliament. Its members are simply trying to force this 27-year old woman to leave her Christian religion and follow their religion, Islam. They are proving that they are a bunch of fearful wimps – so afraid are they of any religion that differs from theirs. But we all know the truth: the strongest person represented in this travesty is Meriam Yehya Ibrahim. She’s not holding on to her religion, she’s holding on to her faith.
Bullies are weaklings in disguise whose only weapon is to assert a strength they will never have.
World-wide epidemic on your doorstep
A May 15, 2014 New York Times article, Alzheimer’s, a Neglected Epidemic by Ginia Bellafante, provides a keen look at a fatal disease that many still assume is one that only other people get. Maybe my coworker a few cubicles away from me or the neighbors down the street will have to deal with some sort of dementia, but not our household – right? You wish. Alzheimer’s is a world-wide epidemic and it’s knocking on your front door.
In 2010, Alzheimer’s was the underlying cause in 500,000 deaths in the United States.
Let’s look at another epidemic with horrific fatality totals. Remember the AIDS crisis? As of the year 2010, in thirty years’ time, AIDS was responsible for 636,000 deaths in the U.S. And yet Alzheimer’s – a very unpopular disease that is erroneously characterized as just an old person’s disease – racked up almost that many deaths in just one year.
Alzheimer’s isn’t just for geezers any more.
That’s the title of one of the chapters in my manuscript – a work of fiction that centers on the lives – patients and their family caregivers – affected by Alzheimer’s or other dementia. A couple of my characters are in their 80s but there are three characters ranging in age from early 40s to mid 60s whose disease journey began when they were no longer considered young – but definitely not considered old.
What will it take to push people out of denial and into activism?
In the New York Times article linked above, AIDS activist, Peter Staley, is quoted as saying, “The hidden blessing of H.I.V was that it hit a community, my community, a community of mostly gay men. We had a base of organizing that came out of Stonewall.” [1969 demonstrations by members of the gay community in response to a police raid at Stonewall Inn, in Greenwich Village.] And then he goes on to say, “Alzheimer’s hits old people. There is no real organized community beyond AARP.”
I’m not happy with Mr. Staley’s characterization of Alzheimer’s as an old person’s disease because it perpetuates a myth that is simply not entirely true. But I fully back his advice to all of us:
How does a large, affected community get the country to care? It means playing a strong inside game: These family members need to organize effectively; they need to find their allies in Congress; they need to show up with sick people in front of key members of health communities.
Right on.
Alzheimer’s struck my dad in his mid-80s and my sister-in-law in her early 60s – both now deceased. 
Who’s next? Me? My daughter?
You? Are you doing your part to shine a spotlight on the hideousness of this fatal disease? At the very least, have you made a monetary donation to the Alzheimer’s Association in your country – a donation from which you will personally benefit? United Kingdom; Alzheimer’s Prevention; Alzheimer’s Society of Canada; Fight Dementia – Australia – to list a few.
Living: the ultimate team sport 