Thank you for returning to this multi-part series on long-term care residents’ rights. At the bottom of this article, you will find links to the previous five postings. As this is the last in the series, I want to advise my readers that I have in no way covered every topic that could be covered in a series such as this one. I have, however, covered complaint topics that quite commonly occur in long-term care settings. In most complaint categories, more than one residents’ rights law has been violated. For the most part, I have only mentioned one aspect of the law that addresses the rights violations.
Today’s topic covers the umbrella topic of dignity and quality of life. Without exception, every rights violation is an infringement of a resident’s dignity and a detriment towards enhancing the quality of life residents should expect to experience. The same holds true whether that resident lives in a “Champagne and Chandelier” facility or a “Generic Brand X” facility. Regardless of how fancy, regardless of how bland, the same rights are afforded to all residents. All situations listed in this six-part series assume a resident is cognitively capable of making his or her own decisions.
Breakfast in bed, pee on the side
I rolled over in bed thinking I might get a few additional minutes of sleep, but those potential minutes were rudely interrupted by the assault from the room’s overhead light, the hustle of someone rushing into my room, and the abrupt raising of the head of my electrically powered bed. I don’t know if you’ve ever tried to remain curled up on your side while half of your bed is put at a 90 degree angle, but trust me, it’s not possible and it’s not comfortable.
“Hey, Gloria, time for breakfast. Come on, open your eyes and sit up so I can give you your breakfast tray.”
I’ve lived in this nursing home for three months now and every time one of these care people talks to me, they call me by my first name, and in my eyes, that’s a sign of disrespect. “First of all, I’ll remind you that my name is Mrs. Lewis, and second of all, I absolutely cannot eat the morning meal prior to going to the bathroom. Please help me to the toilet and then I’ll have my breakfast.”
“No can do, Gloria, you’re just one of forty other patients I have to personally deliver meals to this morning. You should have thought of that earlier and asked one of us to take you to the toilet before we started delivering meals.”
“But I was asleep, and besides, I told the head nurse many times that I require toileting assistance and that I require it before my morning meal. How many other times must I make this request?”
“I don’t know, how many?”
I looked at this uncaring individual and pleaded with her. “Please won’t you take me to the potty? My bladder is ready to burst!”
“Look, I’m already running behind. Just go in your pants, that’s what your nighttime diaper is for any way. Sometime after your breakfast, someone will clean you up, but it won’t be me. After I deliver all my trays, my shift is over.”
Imagine, if you can, not having the opportunity to use the bathroom after a full night’s sleep, and trying to enjoy a meal that is placed before you. Then imagine not being able to hold it any longer and peeing yourself and sitting in it for who knows how long. The above scenario is real. A family member of mine experienced this exact scenario. I also am acquainted with a gentleman who, after asking three times in a half hour period to be assisted to the restroom so he could evacuate his bowels, he was told “Go in your pants. I don’t have time to help you right now.” That neglect does not preserve a person’s dignity, nor does it promote quality of life.
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. See also Washington State law RCW 70.129.005 and RCW 70.129.140
What follows are a few other frequently occurring scenarios found in LTC residential settings:
Visitation policies: residents have the right to receive visitors of his/her choosing and a facility must not interfere with such access. There is no such thing as visiting hours, regardless of the LTC setting. If an adult son’s work schedule is such that he can only visit before 8 a.m. or after 9 p.m., reasonable accommodation must be made to facilitate his visit.
Choices regarding schedules, clothing: regardless of LTC dining room and meal hours, a resident has the right to receive meals outside of those hours. For example, if a resident is not an early-riser, he should still be able to acquire a suitable breakfast meal; this does not mean that he has full access to all that was offered prior to the “end” of breakfast hours, but he should still be able to eat breakfast items. A peanut butter & jelly sandwich does not qualify as such – unless, of course, that’s his choice. Unless a resident has turned over the responsibility of making daily clothing choices to a staff person, a resident must be given the opportunity to make clothing choices that are important to her. Clothing choices promote individuality. Each of you reading this article dress as you please; that shouldn’t change just because you move into an institutional setting.
Isolation & seclusion: punishment to a resident for perceived misbehavior in the form of prohibiting participation in dining room meals and/or activities of his choosing, is not appropriate and is a complete violation of a resident’s rights. A better response to behavioral issues is to discern the cause of said issues, e.g., depression, medication anomalies, medical conditions such as a urinary tract infection (UTI). Resolve the cause, and you resolve the effect.
Series links: Part 1, the right to make choices that are important to the resident; Part 2, admission polices, waivers of liability; Part 3, eviction and discharge process; Part 4, substandard and neglectful care; Part 5, accepting or rejecting medical care.
I guess when you don’t have a choice in the matter you gradually come around to liking life in the assisted living “community” as the staff at this facility like to call it. When I couldn’t get around my old place without the constant threat of falling in the neighborhood or falling asleep at the wheel of my 1994 Mercury Sable, I took my son’s advice as gospel, and let him move me five miles from my lady friends, and ten miles from the Baptist church I had attended for God knows how long.
Now, my only option is to attend an ecumenical service in the activity room each Sunday – it more or less satisfies those who rely on some sort of ritual to get them through the following week – and I have a completely new set of lady friends with whom I eat every meal.
It must be baseball season; for lunch today, the dining room is decorated with red, white, and blue crepe paper and the centerpieces contain a miniature bat and ball placed “just so” surrounded by a pile of sticky Cracker Jacks that we’re told are not edible, but I try one anyway and add credibility to the admonishment by spitting it out into my napkin.
Lord have mercy, we even have a special lunch menu from which we can choose what apparently is considered food one would eat at sporting exhibitions: hot dogs, hamburgers, fries, all served with a gigantic phallic-looking dill pickle on the side. Now, don’t act so shocked. The young people don’t think us older folk know what the intimate body parts are called and that we would never know what to do with them even if we did, but let me tell you, my group of lady friends have a laugh or two over things of a sexual nature. We’re not dead yet and most of our memories of such things are still intact.
The four of us ordered the chili dog special and got caught up on all the latest news since the previous time we saw each other. About ten minutes later, my meal was served, followed by everyone else’s, and the young server said, “Bon appetite!” But something was horribly wrong. Before the gal got too far away, I beckoned her back to the table. “Sweetie, what is this pile of dog-poop looking stuff on my plate?”
“That’s your chili dog.”
“My lady friends ordered the same thing I ordered and yet look at each of theirs: a hot dog is nestled into a bun, smothered by chili, cheddar cheese, and a few onions. My hot dog, on the other hand, looks like a pile of poo!”
The waitress addressed me, and therefore all the other ladies at the table. “We have a Special Menu report the kitchen & wait staff are required to review before each meal. There was an entry for you stating that all your food must be pureed because you’ve been having difficulty swallowing. Evidently, when you went out to dinner with your son a couple days ago, you almost aspirated on a piece of flank steak. Remember? The Maitre d’ of that restaurant had to Heimlich you. You could have choked! You won’t choke on pureed food – or at least we hope you don’t – so that’s what you have to eat. Doctor’s orders.”
My lady friends looked embarrassed for me and pretended that this youngster wasn’t talking about my health issues in front of everyone within hearing range. But that’s not the only thing that’s bothering me right now: I want to eat a chili dog that looks like the rest of the chili dogs on the table so I decided to tell the server. “I’m sorry, remind me of your name, sweetie?”
“My name is Jessica.”
I picked up the plate of poo and shoved it towards her. “Jessica, please toss this mess in the trash and bring out a real chili dog, and while you’re at it, I want a hefty serving of French fries as well.”
“I can’t do that Mrs. Bellamy, I’ll get in trouble.”
“You’ll get in trouble if you don’t provide me with the food that I’ve requested. Please take this plate away from me, my arm is getting tired holding it up.”
The youngster took my plate and with the other hand, signaled her boss to join her in the kitchen – no doubt to report my aberrant behavior. My lady friends, however, applauded my assertive efforts, and offered me a bite of their dogs while I waited for mine to be served.
Mrs. Bellamy’s pureed diet was prescribed by her doctor; as such, it is now a part of her medical profile at the assisted living facility in which she lives. Mrs. Bellamy chose to ignore her doctor’s orders – certainly her right whether she lived in her private home or this public facility. Residents at LTC facilities have the right to refuse prescribed treatments such as restrictive diets, medications, or physical therapy to name a few. As cognitively capable adults, they have the right to go against doctor’s orders, fully understanding the risks of not abiding by such orders.
42 CFR 483.10
(b) Notice of rights and services.
(1) The facility must inform the resident both orally and in writing in a language that the resident understands of his or her rights and rules and regulations governing resident conduct and responsibilities during the stay in the facility…
(3) The resident has the right to be fully informed in language that he or she can understand, of his or her total health status, including but not limited to, his or her medical condition;
(4) The resident has the right to refuse treatment, to refuse to participate in experimental research, and to formulate an advance directive as specified in paragraph (8) of this section; …
(d) Free choice. The resident has the right to –
(1) Choose a personal attending physician;
(2) Be fully informed in advance about care and treatment and of any changes in that care or treatment that may affect the resident’s well-being; and
(3) Unless adjudged incompetent or otherwise found to be incapacitated under the laws of the State, participate in planning care and treatment or changes in care and treatment. See also Washington State law RCW 74.42.040(3)
Additionally, Mrs. Bellamy’s medical condition should not have been discussed in front of everyone within hearing distance: her lady friends, other residents seated adjacent to Mrs. Bellamy’s table. The HIPAA Privacy Rule also applies in LTC settings. Jessica, the server, violated Mrs. Bellamy’s right to privacy by talking about her medical condition.
My mother was the quintessential social butterfly but not in the way one might imagine. Her social involvement didn’t include tennis or golf, nor did it center on being seen at extravagant galas around the city. My mother, Joan Young, socialized with the homeless, the hungry, and the vulnerable. Mom was a volunteer extraordinaire whose monthly calendar was filled with opportunities in which she would donate her time, her resources, and her compassion.
One of her most time-consuming, but most gratifying volunteer venues, was as an activity assistant at Shady Rest Nursing and Rehab Center. That same venue is now her permanent home where she’s lived the past month and a half since a massive stroke robbed her of the ability to speak or move her limbs. We think she understands what we say to her because oftentimes she’ll get a twinkle in her eye that appears to relay some sort of connection with us. The experts say she most likely still recognizes us, but even if that is not the case, I hope the presence of smiling, happy visitors go far towards improving her quality of life.
The last few days, however, mom was withdrawn, and more often than not, she slept through my visit. Because I live within close proximity of the Shady Rest, I visit her almost daily. Dad and his wife live another state over, so although they were on speaking terms prior to mom’s stroke, speaking to anyone isn’t really mom’s strong suit right now. I don’t mind carrying the torch for mom; she’d do the same for me.
After four days of a significant reduction in alertness, I talked to the head floor nurse to discuss mom’s change in condition. She assured me that one can expect sudden changes in levels of cognition after the assault that was placed on her body as a result of the stroke. The nurse told me to toss my cares aside and trust the Shady Rest staff with mom’s care. “She’s in good hands, Robin. There’s no need for you to worry. If there is ever anything that needs medical attention, be assured we’ll take care of her.”
But they didn’t. Three days later, I noticed a fetid smell as soon as I entered her room. At first I thought that perhaps mom had gone Number 2 in her adult diapers but when I lifted up the sheet that covered her body, I saw she wasn’t wearing any. But oh my God, the smell was even worse. I looked behind me to see if anyone was looking, and seeing that the coast was clear, I gently rolled my mother’s body away from me and discovered the source of the stench: an oozing, red and green sore about the size of a quarter on her left buttocks. I couldn’t help myself; I ran into the bathroom and threw up the lunch I had eaten prior to arriving.
Then I pushed the Call Button which is supposed to summon a health worker post-haste – or so I was told when mom first moved in. Three minutes ticked by: no response. I pushed the button again, this time walking to the doorway of mom’s room to look up and down the hallway for signs of incoming staff members. Not a soul in sight.
I left my mother’s room in search of a staff person and landed in front of the nurses’ station. I pounded on the counter, “Hello! I’m Robin, Joan Young’s daughter. I called you twice from my mom’s room.” That’s when I heard, for the first time, a sound that in the past always seemed to be an indeterminate background noise: the persistent dinging of Call Button tones from various rooms on the floor. A quick glance up and down the hallway also showed lights blinking above numerous rooms that coincided with each ding.
I pounded the counter again and pointed at the LPN sitting at a computer. “You, follow me.”
“Miss Robin, I’m finishing up a report, I can’t leave my desk right now.”
I tossed all protocol to the side, walked behind the counter, pulled the computer mouse out of her hand, jerked her chair back and tilted it forward. “Come with me, now.”
That seemed to work but I didn’t take any chances. I held her hand and pulled her down the hallway into my mother’s room. “Do you smell that?” And then I pulled down the sheet on my mother’s bed, gently rolled her away from us and added, “Do you see that?”
“Oh my, Mrs. Young has a bed sore.”
“Ya’ think? This sore didn’t just materialize in the past three hours ya know. It’s been festering.”
“You could be right.”
“No, I am right. I want you to summon the head of nursing and I want you to summon her now. Tell her to meet me in my mom’s room, ASAP.” The LPN didn’t move, so I pushed her out the door. “Go!”
*****
The bed sore – or decubitus – had yet to go bone deep. Had that been the case, mom would most likely not have recovered from the infection. As it was, her health never returned to its previous state, even with the excellent care she receives at a different nursing home, thirty miles away from where I live. Sunnyside Nursing Home wasn’t as fancy as the other place, but obviously, looks can be very deceiving. What my mom saw as an activity assistant volunteer was far different from what she experienced as a patient. When we chose Shady Rest as her new home, we did so without the benefit of readily available resources that would have provided red flags as to the quality of care provided. We figured, “Heck, mom loved volunteering at Shady Rest, why look any further?”
Shame on us.
Joan Young was the victim of willful inaction that caused a potentially fatal injury to her person. Joan’s inability to verbalize or express her pain and discomfort, other than the withdrawal and malaise eventually recognized by her daughter, put Joan at even greater risk of serious health decline resultant from the unattended bedsore. Facilities must assure that a resident’s body is routinely turned to different and varied sitting and lying positions in an effort to prevent such bedsores. In addition to bedsore prevention, if Joan had been diligently cared for – for example, if her ongoing bathing and care plan had been strictly followed – any skin abnormalities would have been immediately noted and attended to and infection could have been avoided.
42 CFR 483.25 Quality of care. Each resident must receive and the facility must provide the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being, in accordance with the comprehensive assessment and plan of care …
(c) Pressure sores. Based on the comprehensive assessment of a resident, the facility must ensure that –
(1) A resident who enters the facility without pressure sores does not develop pressure sores unless the individual’s clinical condition demonstrates that they were unavoidable; and
(2) A resident having pressure sores receives necessary treatment and services to promote healing, prevent infection and prevent new sores from developing. See also Washington State law RCW 74.34.
Some of you readers might be thinking, Well, if her daughter had been more attentive, she would have noticed the sore earlier or Why didn’t she say something about her mother’s malaise right away instead of waiting several days? Being an armchair quarterback is a very easy position to play. The very unfortunate – yet somewhat understandable – attitude of some family members and/or patients is: This is a licensed facility staffed by medical professionals; who am I to question their ability to take care of my mother? The answer to that is obvious: even when a family member moves into a long-term care setting, you must continue to exercise your role as family advocate. I understand the relief one feels of trusting ones care to a staff of professionals, but the unfortunate truth is sometimes that trust is misplaced.
Part 5 of this series will deal with a resident’s right to make choices about their own medical treatment. Part 5 will be posted on Friday morning, November 21.
“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 483.12Admission, 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
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.
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.
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.
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?
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.
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.
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.
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.
My daughter & I outside the Varsity Theatre, Seattle, after viewing the documentary.
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.
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.
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.
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.)
Painting courtesy of Mary Riesche Studios
Additional articles that will provide information and suggestions to non-caregivers on how they can help their neighbor, co-worker, besieged family member:
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.”
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.
Check out and follow his blog as I started doing just the other day.
I hope you’ll visit – and even follow – his site. It deserves to be in your Favorites folder.
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.
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.”
My family in the 70s. My dad died from Alzheimer’s, as did my brother’s wife.
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.
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.
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.
If you have been bitten by a dog you’re in good company. I read the following statistics in the May 16, 2014 issue of the Seattle Times newspaper:
In 2013, 4.5 million Americans were bitten by dogs in the United States;
The above total includes more than 2 million children and almost 5,600 U.S Postal Service employees.
Gee, statistics for 2014 will include me in the number of Americans bitten in the United States. I seem to have greater potential for becoming part of those statistics than making a name for myself as a published author.
Future Margarita rewards for when my manuscript gets picked up.
The title for this article is my shameless attempt to keep my novel-writing in the forefront of everyone’s minds.
I’m pretty excited however – not by the dog bite episode of May 7th – but by the status of my manuscript. I’ve almost finished reading it through – for the zillion’th time – and thus far I’m pleased with the cohesiveness of the storyline. I’m still making edits in grammar and punctuation – semi-colons and hyphens/dashes are really stymieing me – but I’m hoping if I do my very best, a copy editor will do the rest. I am 100% certain that an agent will want to represent a book that throws a personal and touching spotlight on those who are living with Alzheimer’s and dementia. There’s not an agent or publisher out there who hasn’t been affected by this disease – either peripherally or specifically.
Please stay tuned as I will be providing updates in an effort to keep me on my toes, keep me honest, and get this d@*#mn book published.
Caring for a loved one is a full-time job, as one of my fellow bloggers clearly illustrates in the attached article. Please read her article, especially if you’re not quite aware of how full the carer’s day can be.
My father died of Alzheimer’s 10/13/2007. I’m on the left, then my hubby, then my brother.
There’s a reason why the book, The 36-Hour Day (now in its 6th edition) is so popular with health professionals and family caregivers. The subtitle for the book reads, A Family Guide to Caring for Persons with Alzheimer’s Disease, related Dementias, and Memory Loss. As the former caregiver for my father who died from Alzheimer’s in 2007, I can verify that whether you are providing hands-on care or managerial long-distance care for a loved one, your job never ends. A normal day is a relative term that changes with every day or hour – or as is sometimes the case – every minute.
My article, A normal day, caregiving style, throws a spotlight on how a patient’s and caregiver’s life changes once a diagnosis has been delivered. The concept of normal is an ever-changing paradigm where the sand on the beach shifts so much, one can barely hold herself upright.
I celebrate all caregivers who manage this extraordinary task so well, and so devotedly. You are a hero to many.
And yet many drivers that are cognitively impaired are doing just that. Justin Runquist’s Seattle Times article, attached above, addresses the wave of aging drivers that has swept onto our roads. I’ll be the first to admit that dementia isn’t always the impairment associated with aging drivers. Sometimes medication side effects and/or slower response times – even without Alzheimer’s or dementia – can be the cause of accidents that can harm the driver, and anyone in his or her path.
In this article, however, I address the type of DUI that does involve dementia. As I mentioned in my two part series: Driving under the influence of dementia and Part 2 of that article, there are far too many news reports covering the risks of impaired driving – many of which end in disaster.
My dad (circa 1980’s) gave up his car keys shortly before being diagnosed with Alzheimer’s.
How can we possibly take comfort in denying that either ourselves or our loved ones should no longer get behind the wheel? This type of denial is dangerous but it is possible to get around the difficulties associated with this subject without alienating yourself or others.
For those of you who are still driving and who have considered even once that you shouldn’t be doing so – please read all the articles attached within this blog entry and then decide if you still feel comfortable driving a weapon that might kill you, or someone in your path. And for you adult children who have felt the same uncomfortableness surrounding your own parents’ driving skills – take heed and act before it’s too late.
Approaching The Final Destination. The attached article focuses on one caregiving journey that is coming to an end. Chris McClellan’s caregiving journey is coming to a close because his partner, TLO, is approaching his final destination. Recently, another blogger that I follow, who was the caregiver for her husband, Chuck, came to the end of her caregiving journey because Chuck approached, and reached, his final destination.
Each caregiver/blogger that I follow has said the same thing in almost the same words that echo how Chris describes the tenor of the day-to-day life of a caregiver: “I’ve come to realize that what I might think is a routine day, is totally off the charts by normal standards. I’m sure most family caregivers can get in touch with that.”
Whether a loved one needs care because of cancer, as in TLO’s case, or Alzheimer’s, as in Chuck’s case, the lives of both caregiver and patient are forever changed once a diagnosis is pronounced. The 10-15 minute medical consultation in an exam room or a doctor’s private office thrusts the recipients into the as-yet-unknown world of living with a terminal illness.
My father and my sister-in-law, both of whom died from Alzheimer’s.
My brother’s wife, Nancy, was diagnosed with mixed dementia when she was barely 65-years old. In the first article on my brother’s caregiving blog, he also characterizes diagnosis day as the day his life, and that of his wife, changed forever.
Normal becomes a shifting paradigm that can look different from month to month or moment to moment as a loved one’s disease progresses towards its final destination. Both caregiver and patient can’t recall – for one reason or another – what normal used to mean before the disease’s arrival in their lives. I know from personal experience with my father, that the caregiver truly can’t imagine life without caregiving – so all-consuming and life-changing is a fatal disease in ones life.
Normal? What does that mean? And in the midst of caregiving, you become aware that the only escape from this new and ever-changing normal is the death of the one for whom you provide care. What liberation! What freedom lies on the horizon!
No, that is not what the caregiver is thinking. He or she is focused on the here and now, because such focus is required in order to adjust to the shifting sands of normalcy.
But the end does come as it did with my father on October 13, 2007, with my sister-in-law on July 4, 2012, with Chuck in late February 2014, and as will happen with TLO once Chris and TLO’s journey comes to an end.
What we all would give for just one more day of abnormal normalcy with our loved ones.
But all journeys come to an end, and none of us would rob our loved ones of their final escape to a destination towards which their lives had been headed since their own personal diagnosis day.
Freedom from pain; freedom from physical and cognitive restrictions. Let it be.
It’s not often – or ever – that I would tout the beauty and benefits of mice, especially since where I live in a very rural part of my city, mice are a force with which to be reckoned during their annual winter attempts to seek warmth in crawl spaces, attics, and home interiors.
Today, however, I am making a one-time exception because it appears that mice brains have become very valuable in the medical and science worlds’ attempts to map the human brain, and mapping the human brain contributes to the effort of solving brain diseases such as Alzheimer’s. I’ll leave it up to you to read the full article, attached above, because my efforts at summarizing scientific jargon would fall short of doing that science justice.
What I will say, however, is that I am extraordinarily excited that valid attempts are being made to decipher the science of our brains; attempts that generate hope in the lives of those of us who have personally experienced the destruction of a loved one’s brain by Alzheimer’s – a disease that I’ve been known to call “a murderer.” Read my article, Alzheimer’s disease is a murderer to understand the full impact of my feelings on the subject matter.
I know that a lot of behind the scenes research is being done to eradicate a disease that is always fatal, but we aren’t always privy to what that research looks like. I’ve read numerous horrific statistics about the numbers of people who have – and will have – Alzheimer’s in the years to come. Part of those statistics include the detailed monetary impact on society as a whole, as well as the personal and emotional costs to each of us who have dealt with, and who have yet to deal with, the disease’s intrusion into our lives.
I congratulate the Seattle Times and the New York Times, for publishing the above article. And I sincerely thank the Allen Institute for Brain Science for taking on a task whose efforts will benefit every last one of us in this country, and around the world.
You are my hero Paul Allen. Keep up the good work.
If the monster called Alzheimer’s is going to get you, you may as well be prepared.
How I’m Preparing to Get Alzheimer’s, is a 6 minute and 24 second video recorded in June 2012 at TED Global in Edinburgh, Scotland. This brief talk by Alanna Shaikh will do more to wake you up about this disease than anything you’ve heard thus far.
If there is even the slightest chance that one of us will get Alzheimer’s or other dementia – and trust me, there’s more than the slightest chance – then we’d better start shaping what Alzheimer’s will look like for you and me. Here’s an example.
Ms. Shaikh’s father has Alzheimer’s and she talks about the various hobbies and interests held by her father when he was healthier and how those interests carry through during the Alzheimer’s disease process. He was a college professor at a state school and as Alanna put it, “he knows what paperwork looks like.” Now in the depths of his disease, someone can put any type of form in front of him and he will gladly fill it out, arbitrarily writing his name or numbers on the various lines provided, and he’ll check the boxes littered throughout the form. He flourishes in that engagement of his time.
What happens, however, when your favorite hobby pre-disease is reading and editing academic journals, racing cars, or using electric shop tools to make beautiful well-crafted furniture? How will those hobbies or skills survive the disease process? Not very well. So Alanna has come up with three things that she’s doing now to prepare her for the possibility of the Alzheimer’s monster invading her life.
Please watch Alanna’s video. I think you will be impressed by her thought process.
The above mini-article, This Magic Moment, by a fellow blogger, is magnificent in its message of hope, love, and connection.
Caring for a loved one with Alzheimer’s or other dementia, in this instance a spouse, is a difficult task and so very unpredictable. Sometimes the unpredictability brings heartache and extreme difficulty.
However …
sometimes the unpredictability results in a heart filled with renewed promise of goodness and beauty. Celebrating every victory that comes our way – regardless of how small some may think it to be – is reason to strike up the band, blow up the party balloons, and relish the joy that exists in that very moment.
Click on the link above to read about one man’s journey from spousal caregiver to professional coach of those who are caring for loved ones with Alzheimer’s or other dementia.
My hero – my father: 1918 – 2007
During my time of caregiving, (my father died in 2007 from complications relating to Alzheimer’s disease) I oftentimes sought out the advice of anyone I could get my hands on who might a) lighten the emotional load I was carrying; b) lead me in the right direction when looking for next steps in the caregiving process; and c) let me cry a river as I pondered whether I was doing enough for the one for whom I provided care.
Way back when I was enmeshed on my caregiving journey, I was not aware that this type of coaching service was available – perhaps it wasn’t. What speaks volumes to me is that the prevalence of Alzheimer’s and other dementia is such that more and more people seem to be adrift and searching for that beacon of light that might pull them safely to shore.
One thing I know for sure, however, is that if it takes a village to raise a child, it certainly takes at least that when trying to take care of a cognitively challenged parent, spouse, sibling, partner, or friend.
Lately I’ve read various blog posts mentioning that employees of long-term care (LTC) facilities are routinely disregarding the rights of their residents. What’s that you say? You didn’t know that when these older folks walked through the doors of a facility, thus giving up their cherished long-term independence, they actually gained rights that they never had before? Here’s some information that will benefit you and your loved ones. I’ll explain by way of providing a few examples:
Charlie moves his mother into a facility and the head of Health and Wellness strongly suggests that he not visit her for awhile so she can adjust to living in a different environment.
WRONG! If mom wants her son to visit her, Charlie should ignore the “advice” of the H&W employee and visit mom as often, and as long, as he and his mom wishes. Logic: What do you think benefits mom most? The calming presence of her son who has been the only constant in her life, or the absence of any person or thing that would lessen the feeling of abandonment in a strange environment?
June, who is confined to a wheelchair, is forced to go to an activity by facility staff. Apparently June’s family has asked staff members to make sure that June gets out of her room and socializes with other residents. On this particular day June would rather stay in her apartment and watch game shows on television.
Who wins this argument? June should because it’s her life, and neither staff, nor family, can force her to do anything. Logic: Doesn’t someone who’s lived at least 7 or 8 decades have the right to make decisions that are important to her? Yes – and that right is protected by law. Legal implications: June is reliant on others to transport her to and from places, therefore when she’s taken to the activity room against her wishes, the law considers that action as physical restraint because she is “stuck” in the activity room and in her chair, and not able to physically move herself elsewhere on her own steam. Additionally, the facility is guilty of coercion – forcing June to do something she doesn’t want to do.
George joins his buddies in the dining room for lunch and orders a chili dog and a Bud Lite. When the meals for him and his buddies are served, George’s chili dog has been pureed and his beer has been substituted with a glass of iced tea.
Dilemma: The server tells George that his doctor ordered a pureed diet because George almost choked on a roll at a nearby restaurant and he risks aspirating on his food. The server then tells George, and anyone within hearing distance, that his doctor also said George should not drink alcohol because of his diabetes.
Rights infractions: The server talked about a medical condition in front of his buddies by mentioning two medical conditions: George’s choking hazard and his diabetes. That’s a violation of his privacy rights. George is aware of the choking incident – and he is also aware that alcohol may not be such a good idea because of his diabetes – but he is making an informed decision to eat and drink what he wants, knowing all the risks involved. Solution: Oftentimes facilities are worried about liability in these types of situations – very understandable. To resolve such a concern, all that is needed is to conduct a “care conference” in which the health & wellness director, George, and perhaps his doctor by phone, discuss the risks inherent with George’s decisions. They can easily discern that George has weighed the pros and cons and that although he acknowledges that doctor’s orders have been issued, George decides to disregard said orders. Care conference notes should indicate the gist of the discussion; perhaps everyone in attendance signs their name agreeing that what is written in the notes accurately reflects the points covered in the discussion, and then everyone should be happy and no lawyers need to be involved.
I strongly suggest that you contact the long-term care ombudsman in your state should you have any inkling that your loved one’s rights are being neglected. Visit the National Ombudsman Resource Center (NORC) and join with them to advocate for your loved one. Everyone deserves to be treated with dignity, and certainly all of you would agree that all people should have a satisfying quality of life regardless of ones’ age and residential environment.
Final thought: put yourself in your loved one’s position … what would you want done on your behalf?
Submitted by Boomer98053, a retired Certified Long-Term Care Ombudsman.
The attached 7 minute film depicts a positive take on being an adult child-caregiver for ones mother. The same could have been filmed of a spouse-caregiver because the message is the same.
Please make every effort to watch this film straight through without distraction. I believe you will conclude – as I did – that what is depicted is beautiful beyond measure.
There is no denying that caregiving is extremely difficult. But there are certain opportunities inherent with the task that create a link between the carer and the one being cared for that might not have been possible without dementia’s onset.
One of many walks my father and I took.
As the adult daughter most involved with my father’s care management, I can conclude that through all the difficulties of his Alzheimer’s journey, there was a certain richness to our relationship that might not have existed without the intrusion of Alzheimer’s in his and my life. I would have preferred that he had never suffered and died from this disease – don’t get me wrong – but I’m grateful for the deeper relationship that resulted from it.
I feel blessed to have been on the caregiving journey with my father. And my, oh my, do I still miss him.
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!
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.
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.
What was your longest day like?
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?”
It’s not often – or ever – that I would tout the beauty and benefits of mice, especially since where I live in a very rural part of my city, mice are a force with which to be reckoned during their annual winter attempts to seek warmth in crawl spaces, attics, and home interiors.
The above mini-article, This Magic Moment, by a fellow blogger, is magnificent in its message of hope, love, and connection.
Dilemma: The server tells George that his doctor ordered a pureed diet because George almost choked on a roll at a nearby restaurant and he risks aspirating on his food. The server then tells George, and anyone within hearing distance, that his doctor also said George should not drink alcohol because of his diabetes.
Living: the ultimate team sport 