Category Archives: Senior Housing

Tips for helping a caregiver

to-do-list-749304_640The latest AARP Magazine had a fabulous article providing helpful ways in which to make a caregiver’s life just a wee bit – or quite a bit – better.  Here are a few tips for you to adopt in your life.

  1. Bring her a low-maintenance houseplant
  2. Take in his mail
  3. Do yard upkeep, whether raking leaves, mowing the lawn, shoveling snow
  4. When you’re heading out to buy groceries, ask him if you can pick some things up for him
  5. Take her kids or grandkids to the park or to a movie
  6. Stop by with a board game or a movie to watch – a perfect way to get his mind off things
  7. Visit her with a pet that has a sweet disposition
  8. Take his dog on a walk – maybe on a daily or weekly basis
  9. Do some light housework or repairs: dishes, vacuuming, dusting, ironing, smoke alarm battery and light bulb changing, fixing a leaky faucet
  10. Return her library books
  11. Volunteer to stay at home to wait for the cable technician, repairman, etc. while he attends to other more pressing needs
  12. Bring him a week’s worth of meals in freezable containers
  13. Send her a greeting card on an ongoing basis. Who doesn’t love to receive real postal mail?
  14. When visiting, let the person vent, without passing verbal judgment on what they may say
  15. Do an item or two on her To-Do list – I promise you, her list is extraordinarily long
  16. Offer to make a photo album with him, using photos that mean a lot to him and the rest of the family
  17. Give him a gift card to a restaurant he may enjoy, or better yet, take him out to dinner
  18. Help him decorate for the holidays
  19. Drop off or pick up a prescription
  20. Keep in touch with her, even after her loved one passes. Too often, the grieving one has more attention than she can handle immediately after someone dies, then when she could really use some TLC, no one can be found.


Time to recognize & bolster family caregivers

Family surrounded by caring handsThe proposed Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act would require the development of an integrated national strategy to provide resources for under-served family caregivers in the United States.  If you are not currently a caregiver for a loved one, you most likely will be, and no doubt you know of someone who is already an unpaid caregiver (as opposed to a hired caregiver) for a person in their family.

Source: Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act – AARP

Many families, even those with young children, find themselves thrust into the role of caring for a loved one when they least expect it and can ill afford to.  Caregiving for a child or an adult with disabilities, or caring for an adult with a debilitating illness, has become the norm for many in the United States and abroad.

These caregivers “prepare meals, handle finances, manage medications, drive to doctors’ appointments, help with bathing and dressing, perform complex medical tasks and more – all so loved ones can live at home.”

Family blurred linesKeep in mind, the above tasks are those they were already performing for their own household, tasks that multiplied exponentially with the increased needs of their disabled or ill family member.  Add a job outside of the home to all of that, and you have to wonder how these overworked and over-stressed heroes manage at all!  Continue reading

Sexual intimacy in memory care

Love birdsThe attached New York Times article by Pam Belluck addresses the ambiguous loss experienced by men and women whose spouses are still alive, but not fully there.  More specifically, it addresses the need for intimacy that still exists for the spouse without cognitive decline, and that can also exist for the spouse with the decline.

It is a well-known fact that advancing age doesn’t mean the end of desire for sexual intimacy.  Whether in the privacy of ones home or in a long-term care housing situation, sex is alive and well.  Even people with varying degrees of dementia maintain the desire for intimacy.  What the above NY Times article so carefully exposes, however, is that sometimes the act of consent for such intimacy can be a subjective one when viewed by a third party. Continue reading

A loved one’s move into memory care

An Alzheimer’s Love Story: The First Day of the Rest of My Life.

Distraught manI hope you’ll watch the attached 4 minute video that chronicles a husband’s experience of moving his wife into a memory care facility.

This is not a decision that comes easily to anyone.

Think about it.  You’ve spent decades living with the love of your life.  Your days are structured around each other; the ebb and flow of all those hours are what you crave and enjoy.

You are faced with what will most certainly be an irreversible decision to leave your wife in the hands of others.  You feel guilty, regardless of how well-informed and appropriate the decision. Continue reading

Respect the crabby old lady

Angry personWhen I’m an old lady and end up in a care facility, I sincerely hope my personality and attitudes don’t relegate me to the category of “that crabby old lady in Room 210.”  Have you visited someone in a nursing home or hospital and had the distinct feeling that the patients were treated like numbers or medical cases?  You know what I mean: “the urinary tract infection in 4A” or “the decubitis in South 6.”  Wow, that’s a horrible thing to consider for myself: the history of all my years on this earth being characterized as a medical condition or an intolerable behavior resulting from that condition.

What about my history of being a pretty darn good mother/wife/business person/neighbor/community volunteer/friend?  Doesn’t that person still exist within the body occupying that bed?

Let’s all take the time to read this poem that depicts such a scene.  Gender-wise, this could be about a crabby old man as well. Continue reading

If Alzheimer’s disease isn’t a secret, then why are we whispering?

Alzheimers Research Funding Lags Other Diseases- Dementia – AARP.  The January/February 2015 AARP Bulletin focuses on the prevalence of Alzheimer’s disease in America.  The cover contains photos of fifteen celebrities who died from the disease.  Some of those spotlighted may surprise you because their cause of death was not broadcast to the media.

What a shame.

Quiet 2It’s a shame that the stigma attached to the disease still manages to relegate Alzheimer’s to the closet.  Cancer used to be that closeted disease – so much so that many years ago people shied away from even mentioning the word, preferring to call it “The Big C.”  Before Alzheimer’s disease, cancer was the whispered disease but now the populous embraces each and every body part afflicted, even those considered of a private nature: breast, ovary, prostate, rectum. Continue reading

Welcome to the year 2015!

2015 New Years

If you’re like me, you’re wondering how another year has slipped by so quickly.  I’m sure there were a few of the 52 weeks that seemed to slog by, but all in all we can now look back and marvel at what we accomplished, or what others accomplished in our stead, during the past 365 days.

An accomplishment with which I’m happy is having authored this blog for the past three and a half years.  I’ve provided this blog for you, but I’ve also provided it for me because I truly enjoy having the opportunity to share my experiences and my viewpoints; I hope in the process that I have encouraged, helped, and entertained you.  From the start of Baby Boomers and More in 2011 to the end of 2014, I posted 520 articles.  I’d be a very happy blogger if the quality of those articles surpassed the quantity because if I’m just talking into thin air without benefit to others, its hardly worth the space my blog occupies.

Here are links to the five most visited articles in the year 2014 based on WordPress statistics:
Continue reading

Fine tune your “boogie” for your later years

Please Santa, let me be the smiling lady that gets up and dances.

(photo courtesy of Pixabay)

(photo courtesy of Pixabay)

Are you preparing right now to never lose your boogie, no matter your age?  I am.  The attached article is a delightful story of how music affects the elderly – whether cognitively impaired or not.

The Alive Inside program proved how beneficial music therapy is to those whose world has diminished and whose communication and connection with others has been cut off.  Regardless of the music’s era, regardless of the generation listening to it, everyone can harken back to long-ago memories just by listening to familiar tunes that meant something to us then, and that mean something to us now.

Retaining ones essence and ones individuality goes far towards announcing to the world, “I’m still here; I’ve still got it; I’m still vital.”  As expressed in the article I’ve shared from a fellow blogger, I hope I will indeed be the smiling lady that gets up and dances, and I hope you’ll join me on the dance floor.

Long-term care residents’ rights: Part 6

Photo credit: Ian Merritt

Photo credit: Ian Merritt

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.

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.


Long-term care residents’ rights: Part 5

Photo credit: Ian Merritt

Photo credit: Ian Merritt

Welcome to Part 5 of my series on long-term care (LTC) residents’ rights.  Part 1 focused on a resident’s right to make choices that are important to her.  In Part 2, I discussed the topic of LTC admission procedures, specifically, a Waiver of Liability document that is oftentimes included  in the admission packet.  Part 3 addressed eviction/discharge from a long-term care facility, and Part 4 addressed abuse and substandard care.  Today’s topic addresses a resident’s right to choose, or reject, prescribed medical care.

A pile of poo disguised as a hot dog

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.

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 6, the final installment of this series, will deal with dignity and quality of life.  Part 6 will be posted on Wednesday morning, November 26.

Long-term care residents’ rights: Part 4

Photo credit: Ian Merritt

Photo credit: Ian Merritt

Welcome to Part 4 of my series on long-term care (LTC) residents’ rights.  Part 1 focused on a resident’s right to make choices that are important to her.  In Part 2, I discussed the topic of LTC admission procedures, specifically, a Waiver of Liability document that is oftentimes included  in the admission packet.  Part 3 addressed eviction/discharge from a long-term care facility.  Today’s topic addresses substandard and neglectful care.  Let’s look at this scenario:

Take the pressure off Mom

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.

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 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.


Long-term care residents’ rights: Part 3

Photo credit: Ian Merritt

Photo credit: Ian Merritt

Welcome to Part 3 of my series on long-term care (LTC) residents’ rights.  Part 1 focused on a resident’s right to make choices that are important to her.  In Part 2, I discussed the topic of LTC admission procedures, specifically, a Waiver of Liability document that is oftentimes included  in the admission packet.  Today’s topic speaks of the practice of illegal discharge from a LTC residential setting.

Adios, Mr. Reilly

“What do you mean I have a week to move my father? For what reason?”

Raymond Ortiz, the Easy Breezy Group Home owner, situated himself in the plush chair in which he was sitting, opened up the manila folder that was on the desk in front of him, put on his reading glasses, scanned the piece of paper inside, and then closed the folder. “I know this seems to be coming out of the blue, but the staff and I have decided that your father just doesn’t fit in with the rest of the residents. They, and us, would be happier if Harold wasn’t living here.”

I couldn’t believe what I was hearing; dad had lived at this group home for three months without a complaint from anyone, and now this? “What specifically has he done – or not done – that renders him an unsuitable resident? What do those notes in my dad’s file specify as the reason?”

“You see, it’s not as simple as that. Your father hasn’t complied with the way the other residents live, and let’s not forget, they were here before him.”

I was having a hard time controlling my temper. Through gritted teeth I said, “Specifics, please.”

“For one, he wakes up earlier than the other five residents – sometimes as early as 6 am – and in the evening, he insists on staying up well past 10 pm. His early morning schedule disturbs those who are sleeping, as does his late night schedule. I’m sure you can understand that sleep is a very important aspect of our residents’ healthcare and when that is jeopardized because of just one of our residents, we have to take measures to accommodate the majority.”

“Wait a minute, you mean to tell me that the other residents’ schedules are more important than my father’s? That’s utterly ridiculous. Tell me, is my father doing jumping jacks in the middle of the living room with the stereo blaring while everyone is asleep?”

“Now you’re being silly.”

“No, Mr. Ortiz, now I’m getting angry. If dad isn’t making a ruckus, why the concern? My father has always been an early riser – moving in here shouldn’t require that he change that feature of his life; same goes for staying up later than the others. His end-of-day routine has always involved sitting down with a good book and reading – sometimes for hours on end. What’s so disruptive about that?”

“Two things, really. He flushes the toilet, which of course makes noise, and the resident on the other side of the bathroom hears the flush and his sleep is disturbed. Also, the evening caregiver has evening chores to do and afterwards, lays down on the couch to be rested up for the next day’s activities. He can’t sleep while your father is still awake.”

I closed my eyes and tried to compose myself. “Look, when my dad moved in, you made a point of telling us that Easy Breezy is his home, just as if he owned the place, just as if he’d lived here all his life. Kind of like, ‘Mi casa es su casa’ and I took you at your word. Nothing you’ve said today jives with that sentiment, and I’m quite sure that nothing you’ve mentioned is grounds for throwing him to the curb. First of all, I know you have to give written notice and it has to be given with more notice than you’ve given me, and I’m damn certain your flimsy reasons won’t stand up to legal scrutiny once I’ve looked into this.”

“Now Ms. Reilly, no need to get all huffy about this. That’s just the way it is; majority rules.”

I stood up, slung my purse over my shoulder and said, “We’ll see about that Mr. Ortiz. I’ll be back.”

As Ms. Reilly surmised, any notice of discharge must be made in writing and must be provided at least 30-days from the date of discharge from the facility (said requirements stated at length in 42 CFR 483.12.)  Federal and State governments make it very difficult for administrators/owners to move a resident out of their property.  As stated in the CFR below, there must be a very valid reason, e.g., health and safety of individuals are in jeopardy, and certainly that is not the case in the scenario above.

42 CFR 483.12  Admission, transfer and discharge rights.

(2)  Transfer and discharge requirements.  The facility must permit each resident to remain in the facility, and not transfer or discharge the resident from the facility unless –

(i)  The transfer or discharge is necessary for the resident’s welfare and the resident’s needs cannot be met in the facility;

(ii)  The transfer or discharge is appropriate because the resident’s health has improved sufficiently so the resident no longer needs the services provided by the facility;

(iii)  The safety of individuals in the facility is endangered;

(iv)  The health of individuals in the facility would otherwise be endangered;  See also Washington State law 70.129.110

If you or a loved one need assistance regarding LTC residents’ rights, contact your local LTC Ombudsman office which can be located at the National Long-Term Care Ombudsman Resource Center.

Part 4 of this series will deal with abuse and neglect of residents in LTC facilities.  Part 4 will be posted on Wednesday morning, November 19.



Long-term care residents’ rights: Part 2

Photo credit: Ian Merritt

Photo credit: Ian Merritt

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


That’s my cue to vacate the apartment and let a staff member clean my place. I turned off my Kindle Fire, placed it next to my reading chair, and opened the door. “I’m so glad you’re here. I love having a clean apartment and always look forward to my weekly cleaning.”

“You are Mrs. Ruth Milliken?”

“Yes, that’s me. Are you new on staff at Fairview Manor?”

“Yes, I am Carolina, I start this week. May I come in and clean?”

“Certainly, I’m heading to lunch so take your time.”


It was so nice being able to take advantage of the good weather by having lunch on the patio for a change. I’m going to read a bit and then maybe take a nap; all that sunshine made me a bit sleepy. I unlocked my apartment door, made myself a cup of tea, and returned to my reading chair.

“Oops! I’d swear I left my Kindle right here on the table next to my chair.” I stood up and lifted the seat cushion, thinking perhaps that it slipped between the cushion and chair frame without my knowing it.

“Now this is silly, I know I placed it on the side table.” Just the same, I looked throughout my apartment to make sure I wasn’t mistaken. A sudden realization hit me, “That new housekeeper, she must have stolen it.”

I made my way to the Administrator’s office to report the mishap. “Jason, may I come in?”

“Certainly Mrs. Milliken, have a seat, how can I help you?”

I sat on the edge of one of the visitor chairs and relayed my suspicions about my missing Kindle. “So you see, I’m certain it must have been your new housekeeper, Carolina. She was the only one who had access to my apartment while I was at lunch.”

“Are you sure you’re not mistaken? Was your door locked when you returned from lunch?”

“Yes, it was; at least the housekeeper locked up after herself.”

Jason got up from his desk, retrieved a folder from the large file cabinet behind him, and returned to his desk. “I’m truly sorry you’ve misplaced your IPad.”

“It was a Kindle – the latest Kindle Fire and it was a gift from my daughter-in-law.”

“Okay – Kindle.” He opened the folder and thumbed through a few pages and folded back one of them. “If you’ll look right here, you’ll see that you signed a Waiver of Liability when you moved into Fairview Manor.” He turned the folder towards me so I could read it. “This is your signature, isn’t it?”

“Well, yes, that’s my signature, but you can’t be saying that you’re penalizing me for signing that document. I signed lots of documents that day, fully trusting that everything you placed before me was on the up and up. Let me read that thing.” I glanced through the wording and couldn’t believe what I was reading: Fairview Manor and its parent company, Senior Housing Corporation, accepts no liability for items lost, stolen, or otherwise misplaced.

I looked up at Jason who was comfortably reclining in his executive desk chair. “This is utterly ridiculous; if I had understood what you were asking me to sign, I would have never signed this piece of paper.”

“If you hadn’t, we would have had no recourse but to refuse your admission into our community.”

“But that housekeeper stole my property. You have a thief on staff here.”

“I assure you, every employee hired at Fairview Manor goes through a criminal background check – otherwise they can’t work here.”

“Did Carolina’s background check come back clean?”

“Her State background check came back but not the Federal. She has a clean slate in Oregon, I’m sure the Federal check will come back clean as well.”

I am absolutely stunned; I know the implications. “So she could have committed a crime in another state – which would show up on the Federal database but not the State one – and you let her work here without first knowing if she was cleared?”

Jason had the audacity to shake his head and chuckle. “I assure you, in all my years working in the industry, there’s never been an employee who didn’t pass with flying colors. I’m not worried about Carolina.”

I stood up and addressed the Administrator. “I can’t believe I’ll never see my Kindle again. You can’t possibly think that’s fair, Jason.”

“My hands are tied, fair or not.”

All employees working with vulnerable adults are not permitted to work in a facility without a completed criminal background check.

42 CFR 483.13

(c) Staff treatment of residents.  The facility must develop and implement written policies and procedures that prohibit mistreatment, neglect, and abuse of residents and misappropriation of resident property.

(1) The facility must

(i) Not use verbal, mental, sexual, or physical abuse, corporal punishment, or involuntary seclusion;

(ii) Not  employ individuals who have been

(A) Found guilty of abusing, neglecting, or mistreating residents by a court of law; or

(B) Have had a finding entered into the State nurse aide registry concerning abuse, neglect, mistreatment of residents or misappropriation of their property; and

(iii) Report any knowledge it has of actions by a court of law against an employee which would indicate unfitness for service as a nurse aide of other facility staff to the State nurse aide registry or licensing authorities.

(2)  The facility must ensure that all alleged violations involving mistreatment, neglect, or abuse, including injuries of unknown source, and misappropriation of resident property are reported immediately to the administrator of the facility and to other officials in accordance with State law through established procedures.  See also Washington State law RCW  70.129.130

The admission process into a long-term care facility is stressful on residents and their family members.  What they fail to realize is that the resident agreement they sign, and all other sub-documents of that agreement, are legal documents: some of them binding, others not.  As such, it is a very good idea to read them ahead of time and even have them reviewed by an attorney or legal advocacy group.  Most states do not permit Waivers of Liability to be a part of the LTC admission process.  Administrators, however, oftentimes succeed in slipping that document into the ream of documents residents must sign.  The good news is that such waivers are not enforceable; the bad news is that residents assume that because they signed a Waiver of Liability, they have no recourse when their personal belongings are stolen by staff and/or other residents.

Washington State law RCW 70.129.105  Waiver of liability and resident rights limited.  No long-term care facility or nursing facility licensed under RCW 18.51 shall require or request residents to sign waivers of potential liability for losses of personal property or injury, or to sign waivers of residents’ rights set forth in this chapter or in the applicable licensing or certification laws.

Since the Waiver of Liability is not enforceable, the flip side of that is that the facility is liable and should either replace Mrs. Milliken’s Kindle Fire or provide the funds for her to purchase a new one.

If you or a loved one need assistance regarding LTC residents’ rights, contact your local LTC Ombudsman office which can be located at the National Long-Term Care Ombudsman Resource Center.

Part 3 of this series will deal with the discharge/eviction of a resident from a long-term care facility.  Part 3 will be posted on Friday morning, November 14.






Long-term care residents’ rights: Part 1

Photo credit: Ian Merritt

Photo credit: Ian Merritt

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.





Blogging Award: a very tardy response

First-Best-Moment-Award-WinnerDid you ever get so busy that you received an award and didn’t go pick it up, and then you forgot that it was waiting for you?  That’s me.  Lori, one of my most favorite bloggers, has been writing her blog Let’s Talk About Family since December 2011.  This fabulous person nominated me for the Best Moment Award in May of 2013.  All I can say is that not “picking up” my award qualifies me for the Worst Moment Award, but I’ll try to make up for it with this post.

Lori’s blog family history starts with her mother’s failing health and death, and continues with her father’s life as a widower who eventually moves into an assisted living facility (ALF).  Her blog is one that I never miss.  You know how you can manage the notifications you receive so that you get a notification e-mail immediately, daily, or once weekly?  Her blog is one of those that I receive immediate notifications – I can’t wait any longer! is the way I treat her blog.  Thank you so much for opening up your life to us in the blogging world.

Rules for the Best Moment Award:

Winners post information about the nomination, thanking the person who nominated them, with their acceptance speech that can be written down or video recorded.

Winners have the privilege of awarding the next awardees (see below) The re-post should include a NEW list of people, blogs worthy of the award, and winners notify them the great news.  Winners should also post the award badge on their own website.

What makes a good acceptance speech?
Thank the people who helped you along the way, be humorous if you can to keep the reader entertained and smiling.  Provide inspiration that helps your story to touch the lives of others.

And here’s mine: I’m thrilled to be acknowledged as having something good to say from time to time.  I don’t think I’m an excellent writer, but I do have lots to say and I’m quite willing to write up a storm.  I’m the youngest of three siblings and the only one of us who has been involved in the lives of senior citizens – and everything that involvement implies – for close to two decades.  I’ve always loved people older than me; I guess it gives me comfort knowing that I’m younger than someone else.  My official responsibilities over the years involved: working in the senior housing industry both in the corporate environment and in assisted living/memory care facilities, being an Alzheimer’s Association caregiver support group facilitator, and a Certified Long-Term Care (LTC) Ombudsman for the State of Washington (an advocate for vulnerable adults living in LTC facilities.)  I’m retired from active work but I am actively still involved in being an advocate for the vulnerable by writing my first novel – a project I hope to complete by end of this year.  My novel focuses on the lives of family members who care for a loved one with Alzheimer’s or other dementia.

My nominees for the Best Moment Award are:

Kay Bransford, for Dealing with Dementia.  The reason I enjoy Kay’s blog is best described by her blog’s subtitle: A family caregiver’s journey to deliver loving care with grace and humor.  We all know there is absolutely nothing humorous about Alzheimer’s or other dementia, but humor can be found in the human interactions between caregiver and family member.  If you look for them,  you will find them.  Kay, I’ll be posting my acceptance of a different award you recently nominated me for very soon.  THANK YOU!

Dementia Poetry is an in your face journal of a daughter-in-law’s disease journey with her mother-in-law, in the form of extremely well-written poems.  The subtitle for her blog is: The Politically Incorrect Alzheimer’s Poetry Blog.

Theresa Hupp’s blog, Story and History, is a moving journal of a family’s life covering past, present, and future.  But that’s not all: Theresa is a fabulous, published author.  I’d say I’m jealous, but friends, and that’s what I consider Theresa, don’t turn green with envy – at least they shouldn’t.  Theresa, you nominated me for the Versatile Blogger Award in February of 2014, but I already received that award a couple years ago so I’m not going to claim it again, but I thank you profusely for nominating me.

Reflections on Dementia, Caregiving and Life in General is a must-read blog all the way from Singapore.  This blogger takes care of her mother who has Alzheimer’s and vascular dementia.  Her insights and her view of her world will engage you from the very first posting you read.



Dead Inside

What a horrible title for an article.

It’s also a horrible concept, don’t you think?

But many with dementia are dead inside without any means of engaging with others in meaningful conversation.  Heck, they might not even be able to talk to themselves: a practice I engage in quite frequently.

What an isolating state to be in: you’re there, but not there.

My daughter & I outside the Varsity Theatre, Seattle, after viewing the documentary.

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.

Downsizing our lives

Boomers need help dealing with their parents’ ‘stuff’ | Business & Technology | The Seattle Times.  The attached article by Sacramento Bee reporter, Claudia Buck, provides sage and practical advice for those who are downsizing a parent’s belongings when said parents move into a senior housing environment, and for those who are dispersing the parental belongings after their death.  Please read Ms. Buck’s article; it contains extremely useful information.

The following list gleaned from the article provides a few suggestions worth your consideration:

  • When you set out to eliminate stuff from a residence, don’t get rid of the memories in the process.  Once you’ve dispensed with the goods, you’ll never get them back again.  My mother died in her sleep – no one in the family expected it or prepared for it.  After the funeral event had passed and my brother and sister had returned to Washington and California, I remained to help my father with a massive downsize of his house.  There were obvious sentimental items that were boxed up for later, but for the most part, we stuffed large Hefty bags with items and placed them into two piles: donation-worthy, and garbage.  Not a bad idea, actually, but we didn’t pause long enough to properly discern what should have been kept.  With both parents now deceased, us three adult kids have far too few tactile sentimental items in our possession.
  • Creating a shadowbox of the most precious mementos.  Having read the attached article, I’ve decided to create a shadowbox of the few items remaining from my parents’ lives so I can reminisce at the sight of them.  One thing is for certain: containers full of sentimental nick nacks stacked in a closet do not honor a memory.
  • If you absolutely know that some of the nicer items will not be enjoyed by your household, give them away or donate them so others can.  Look at it this way, your and your parents’ legacies will live on in the lives of others.  Not a bad consolation if I do say so myself.
  • My family in the 70s. I no longer have the red dress I'm wearing, but I do have those earrings my mom is wearing.

    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.

June 21st: The Longest Day Alzheimer’s Style

The Longest Day.  The attached article by Author, Ann Hedreen, can be found linked above, and you can find additional well-written articles on her blog The Restless Nest.  Reader alert: Ms. Hedreen’s book, Her Beautiful Brain, will be released September of this year.

Sunset in RedmondWhat 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.

Jerry and his new rideWhen 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.



Delivering the best customer experience

Regardless of the industry you represent your goal must always be to deliver the best customer experience.

Bar Harbor Cruise ShipI have read and viewed many advertisements in which a company assures a future customer that their goal is to deliver the best customer service to each and every customer they serve.  This is a very commendable goal in my eyes – a goal that must be reached by every provider of products and/or services.  Whether I am a passenger on a multi-level cruise ship or a seaport’s rickety party boat;

Photo credit:

Photo credit: Rob Owen-Wahl

whether I dine at a casual eatery or a popular Michelin 3-star restaurant; whether I am a guest at a Residence Inn or a resident at a senior citizen housing community, you must provide me with the best customer experience you can muster.

A couple months ago, I commented on a LinkedIn article that discussed one particular goal that should be considered by long-term care (LTC) providers, e.g., senior housing, assisted living, and memory care owners and operators.  The particular goal stated in that article was to fill the buildings, attain high census, or as some industry leaders describe as putting “heads in the beds.”

Assisted living apartment. Photo credit: Vyolett

Assisted living apartment. Photo credit: Vyolett

My comment to this article centered on my work as a long-term care ombudsman (advocate for residents living in long-term care facilities).  I explained that when a new General Manager was hired for any of the facilities to which I was assigned, I made a point of meeting her or him to explain my role as a resident advocate and to get to know a bit about this new person who was now in charge of 50 to 100 or more residents.

I asked one particular newbie what he felt was the greatest challenge as the new General Manager for this particular independent/assisted living community.  “Fill up the apartments.”  I suggested that a more appropriate goal might be to retain the residents he already has.  I explained that retaining residents most likely means that he and his staff are doing the right thing in delivering the best care and customer service experience to each of his residents.

  • Retaining the residents he already has equates to fewer additional apartments to fill;
  • Retaining the residents he already has means satisfied residents who say great things about the building thereby attracting additional friends/acquaintances as future residents;
  • Family members of happy residents in LTC means happy adult children who will also spread the good news to others;
  • It stands to reason, therefore, that satisfied current residents are the best tool a manager can maintain in his marketing tool chest.
Dining room at my dad's memory care facility.

Dining room at my dad’s memory care facility.

I have retired from working in long-term care housing and from my advocacy work as a certified LTC ombudsman.  I know first hand the pressure that employees experience each and every month to report the right numbers to the corporate office.  The suits want the bottom line, baby, and if you can’t deliver the numbers they want and need, you’re outta there!  (Just like all the losing pitchers the Seattle Mariners have gone through in the past ten years or so.)

I’m not saying that the Suits are only concerned about profit, but I will say that perhaps their focus needs to center more on the delivery of exceptional care for those who are entrusting the Suits with the lives of mom, dad, spouse/significant other, or sibling.  Those family members want to be able to sleep at night knowing that their loved one is receiving the best care possible, the most nutritious meals known to man, and that their loved one is living in a safe environment staffed by employees who care.

All you have to to is deliver the best customer experience. Do that and the bottom line will take care of itself.

Alzheimer’s shifting personality

Little Did We Know.

The attached article from a blogger that I follow contains extraordinary prose on how dementia can fool, frustrate, and reward, all in one sitting.

Sundowner time

Sundowner time

Please take the time to read her accounting of how Alzheimer’s has encroached on her family.

Caregiving and The 36-Hour Day

A Caregiver’s Day.

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.

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 5th 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.

You are a hero to me.

Advocacy for long-term care residents

Alternate Title:  Give me a damn beer!

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.

Scc dining room & Don setting up ADilemma: 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.

Medical tourism – Alzheimer’s style

More Alzheimer’s patients finding care far from home | Nation & World | The Seattle Times.  This article looks at the direction in which Alzheimer’s care may be shifting.  There are currently 44 million Alzheimer’s patients globally with 135 million projected by 2050.  Even now, Western spouses and family members are faced with an insufficient supply of qualified nurses and facilities, while other countries provide cheaper – and to some minds, better – care for those suffering from an illness for which very few effective treatments have been developed, and that is always fatal.

An enlargeable relief map of Thailand

(Photo credit: Wikipedia)

The treatment center that is the major focus of this Associated Press article is located in Thailand – the Baan Kamlangchay center.  Additional elder care options in other countries are mentioned, such as the Philippines, Eastern Europe, Spain, Greece, and Ukraine.  Cost is the driving force of those who are “exporting” (not my word) the elderly to these foreign countries.  One gentleman from Switzerland brought his 65-year old wife to Baan Kamlangchay because the monthly cost for her Alzheimer’s care ($3,800) is a third of what he would pay in his own country and he states that the staffing ratios are far better, and the activities more engaging.  In the Philippines, care is offered to Americans for $1,500 to $3,500 a month, compared to the average of $6,900 for a private room in a skilled nursing facility in the United States, according to the American Elder Care Research Organization.

Cost shouldn’t be the only consideration, however, when moving a loved one into Alzheimer’s or dementia care – and that applies to every country in which that care is available.  What are the training requirements for those who will be providing this disease-specific care for your loved one?  What type of governmental or social service oversight is in place to protect and advocate for the rights of those patients who can not advocate for themselves?  The latter question becomes extremely relevant when the patients’ families are not around to observe care on an ongoing basis.  In the previous paragraph I mentioned the man who brought his 65-year old wife from Switzerland to Thailand for care.  He is now faced with the very difficult decision of perhaps leaving his wife of 41 years in the facility, and returning to Switzerland to carry on the rest of his life.

That’s a decision unbearable in its emotional implications.

What are your thoughts?  Are you willing to become an expatriate should this medical need present itself in your life?

Life everlasting – is it a good thing?

A recent NY Times article, On Dying After Your Time, poses many topics for discussion that must be addressed.  I knew before I even started to read the article that readers will have varying opinions on the matter of extending life beyond its appointed time to die.  These opinions will be based on ethics, biases, age of the reader, and religious beliefs, to be sure, but another factor that comes into play is the personal experience of each reader.

My father and my sister-in-law, both of whom have died from Alzheimer's in the past five years.

My father and my sister-in-law, both of whom have died from Alzheimer’s in the past five years.

If the reader has watched a loved one perilously balanced in limbo with a ravaged-by-disease body and/or mind, that reader might lean towards declaring that too much is being done to artificially prolong life.  In the past five years of my life, I have watched both my father and my sister-in-law die from Alzheimer’s.  Who they were at the end of their lives didn’t come close to resembling who they were pre-disease.  If the reader has had no experience with this aspect of life and death, that reader may feel more comfortable with the decision to throw every treatment possible at the patient with the goal of allowing that person to live as long as humanly – or scientifically – possible.

One of the issues presented in the NY Times article is the fact that as we live longer, there is an increase in the amount of chronic illnesses – a fact that certainly stands to reason.  “This rise in chronic illness should also give us pause about the idea, common to proponents of radical life extension, that we can slow aging in a way that leaves us in perfectly good health…The evolutionary theory of senescence [growing old; biological aging] can be stated as follows: while bodies are not designed to fail, neither are they designed for extended operation.”

The author of the NY Times article is an 83 year old man who closes out the piece by stating, “We are not, however, obliged to help the old become indefinitely older.  Indeed, our duty may be just the reverse: to let death have its day.”

If you haven’t yet formed an opinion on the matter of  life-extension at all costs – I encourage you to do so before it’s too late.  Life and death decisions are best made well in advance of the necessity of such decisions.

Grandma and Grandpa pods

I read a fabulous article in the “Home” section of today’s Seattle Times newspaper.  It’s a throwaway section that I always read before I toss it into the recycle basket.

Publicity photo of Will Geer and Ellen Corby a...

Publicity photo of Will Geer and Ellen Corby as Grandpa and Grandma Walton from the television program The Waltons. (Photo credit: Wikipedia)

All of us are getting older – there’s no cure for that other than not growing older by leaving this earth before you’re ready – so where are all of us going to live – especially Granny and Pappy who can no longer safely live on their own?

Long-term care (LTC) facilities have priced themselves out of most households’ bank accounts and the alternative solution of having grandparent sitters is cumbersome and expensive in itself.  What’s an adult child to do?  If you have space on your property to have a guest house newly built or better yet, if you’re willing to turn your sunporch or guesthouse into accommodations for mom and dad, the original outlay of funds will pay for itself because you will have avoided the need for a facility’s ultra-expensive long-term care services.

One company that makes the pods spotlighted in the Seattle Times’ article is called Home Care Suites.  Disclaimer: I am not advocating for this company’s product.  I am merely pulling information out of the article and presenting it to the reader so you can do research that applies to your situation and your budget.

The pods made by this company range in size from 256 to 588 square feet with prices ranging from $42,000 to $83,000.  This is no drop in the bucket but let’s consider the cost of facility care.  Genworth (who sells long-term care insurance) states that the average monthly fee for assisted-living (AL) was $3,300 in 2012.  I think that’s a very naive figure based on my experience of having worked in the LTC housing industry.  Maybe Genworth’s lower number is just the cost for monthly rent – but what about care services?  Cha-ching!!!  Now you’re looking at double that amount and the cost will only go higher as care needs increase.  But even at only $3,300 per month, that amounts to $158,400 for a four-year period.  See how do-able the pod concept seems now?

Many of the AL service needs are simple monitoring of a resident – tasks that you can do for your loved one: waking them up, helping them get dressed, a certain amount of medication assistance, meal provision.  Many seniors living in AL facilities don’t need the massive hands-on care of bathing assistance, toileting services, physical therapy, etc.  I know for a fact that if a family member has the time – and a little patience – they can provide these lower acuity services on their own for quite some time before securing hands-on medical care for the elder member of their household.

Skipping ahead to after Grandma and Grandpa/Mom and Dad have passed on, you now are left with an added structure on your property which you can transform back into the porch or game room of its earlier existence, or simply leave as is as a guest room that may accommodate someone else in your family.  I have to believe that your initial investment in constructing a pod is an investment that you won’t regret.  And don’t forget – the costs for such a project aren’t necessarily out of your own pocket.  Perhaps Grandma or Grandpa are willing to pull some of their savings out from underneath their mattress and contribute to the cost of this alternative living arrangement that would certainly be more attractive to them than a lengthy stint at an AL facility or nursing home.  Just saying.

Disposable human beings

Feds: DSHS neglected disabled to cut costs, may owe $16M | Local News | The Seattle Times.

You can’t open a newspaper these days without reading about budget cuts to Federal, State, and City services.  Memos are flying around these offices demanding across the board reductions or else!

The State of Washington figured out a way to save more than one million dollars and its Department of Social and Health Services is the brainchild of this impressive savings coup: deprive those with developmental disabilities the required services mandated by law that help them to function better in society.  The required services include physical and occupational therapy, personal-care training, speech therapy, guided behavioral norms, job skills, and recreation.

Two dozen developmentally disabled residents of Lakeland Village in Spokane, Washington – a state and federally funded long-term care facility – were denied these services for two years – most likely causing irreparable damage to these residents.  Let’s see – two dozen residents for two years – how many times was the law broken as a result?

41,231 times

How did they pull it off?  They moved a couple dozen residents from the intermediate-care facility of Lakeland Village into its nursing facility which is cheaper because that part of the facility does not have to provide the specialized services that the developmentally disabled residents need.  The relocated men and women received excellent medical care – most of which wasn’t called for – but they were deprived of all the quality-of-life services they needed most.  This violation of federal law means that the facility received federal funds in error – funds that were meant to cover legally mandated services at the facility.

When the investigation was launched and DSHS was told to provide documentation for the time period in question, there was little evidence that the specialized services had been provided.  In response, DSHS stated, “We didn’t make good documentation, or indeed, we didn’t provide some of them (documents).”  It is thought that the reason the paperwork wasn’t found, is that it doesn’t exist.

The State tried to cut its budget by $1 million by fraudulently withholding required care services.  The investigation continues while it is estimated that the federal government will penalize the State of Washington/the Department of Social and Health Services in the amount of $16 million.

English: Garbage bins in a row, during prepara...

(Photo credit: Wikipedia)

But you and I already know that the biggest price has already been paid by the disposed of human beings.

Sex in long-term care dementia units

Bloomberg Businessweek posted a provocative article, Sex Among Dementia Patients Spurs Call for Policies, that will no doubt get the attention of professionals, and family members alike.  The attached article is well-worth the read, and I have a few comments of my own to add.


(Photo credit: Wikipedia)

I acknowledge that sexual activities most likely occur in every long-term setting out there.  Consenting adults – even those with varying degrees of dementia – need touch and physical connection.  I think it’s fabulous that in spite of the limitations brought about by cognitive impairment, human beings still maintain the desire to give affection, and receive affection.  In some instances, affection may simply be expressed with hand holding or sitting next to someone, hip-to-hip.  Or perhaps a hug and a kiss are involved.  All of these actions are perfectly innocent without harm as long as all touching is consensual.

Some residents may express their need to give and receive affection with more intimate sexual activities, so if both parties are willing and able, I think intimacy is an important part of their well-being.

What about those patients who are already married to someone else?

English: Gender symbols for homosexuality (les...

(Photo credit: Wikipedia)

It takes an understanding and flexible spouse or partner to overlook the intimate activities of their cognitively impaired loved one.  The commitment made between the two parties years ago is a commitment that still resides within the deep recesses of that person’s being – but it’s a commitment that can not be drawn upon and reaffirmed because of memory impairment.  (I think it’s important to not assume that adulterous motivations are in play here.)  Marriage itself may be a concept that is no longer understood by the patient, and as is oftentimes the case – the visiting spouse exists as a friendly visitor, not the wife or husband that the patient used to know.

I can’t predict how I would feel if similar circumstances came my way in the future – my husband and I have not fallen into the cognitive impaired category – yet.  And you don’t have to agree with what I’ve stated above.  The sentiments I have provided come from my own personal beliefs, and from the perspective of having both worked in long-term care in my past, and having had family members who have lived in long-term care housing.

One last thing: As dementia care specialist Teepa Snow stated in the attached article, “No matter what you do, somebody’s going to see you as wrong.”  The issues of sex and intimacy touch many personal, religious, and ethnic biases and beliefs.  There are no completely right or completely wrong answers.  I’m simply thrilled that the long-term care industry has stopped pretending that geriatric sex isn’t happening, and that they are no longer treating it as a taboo subject.  I take comfort in that fact.

A difficult but necessary conversation

‘The Other Talk’ Helps You Discuss Tough Decisions With Adult Children – AARP.

When your children attained the age wherein having “The Talk” about sex and other scary things became unavoidable, you simply jumped in and  winged it – wanting to explain as much to your kids as they needed to know but trying not to lend any encouragement towards participation in said scary things.  Didn’t you feel better once you checked that “To Do” item off your child-rearing list?  I know I did.

My father in mid-stage Alzheimer's.

My father in mid-stage Alzheimer’s.

“The Other Talk” is that which you need to have with your adult-sized children, regardless of how uncomfortable you – or your children – are about topics such as: illness, death, and finances. Acccckkkkk!

My mother and my daughter, circa 1977.

My mother and my daughter, circa 1977.

Or perhaps it’s the other way around.  The adult children are broaching these difficult topics with their parents in the hopes that said parents will do something about these unavoidable issues.  Regardless of who is on the receiving end of these discussions, they should be considered mandatory in every family.

Consider this scenario: Dad is dying of cancer and in a coma.  Your mother has already passed on, and you have no idea what your dad wants.  His cancer is inoperable and he’s having more and more difficulty breathing and he hasn’t had any nourishment by mouth since he went into a coma.  Does he want breathing assistance?  Does he want intravenous liquids and nourishment?  Does he want pain medication to help him through the extreme pain that cancer causes, even if the medication hastens his death?

What’s a son or daughter to do?  Wing it?

Let’s look at another scenario: Mom is in the advanced stages of Alzheimer’s and is unconscious more than she is conscious.  There is no reversal possible of the debilitating effect this disease has had on her body: her doctor tells the family that their mother’s ability to swallow is greatly compromised, her breathing is becoming more and more labored, and she has shown no interest whatsoever in food or liquids.  Her body is in the active stages of dying.

In this scenario, dad is still living and cognitively competent and he has told the family and your mother’s doctor that he wants every single measure possible to be employed to keep his bride of sixty-five years alive.  You, however, have a copy of your mother’s living will/advanced health care directive – as does your father – which contains conflicting wishes to those of your father.  Your mother wants no extraordinary measures employed – not a respirator, not a gastric feeding tube, no intravenous nourishment, nothing except for medication that will make her as comfortable as possible as she leaves this world.  When your mother was fully aware and cognitively healthy, she had her wishes incorporated into a legal document, determined to take the responsibility of making such decisions out of her loved ones’ hands.

What’s a son or daughter to do?  Follow mom’s wishes.

What a gift that is – carrying out your loved one’s wishes when she is no longer able to verbalize them.  It would still be a gift if mom’s wishes were clearly spelled out that she wanted everything done to keep her alive as long as possible.  The point is not what was decided that is important – it’s that the decision had already been made – a decision that remained in the hands of the patient/family member.

Both of my parents gifted me and my two siblings with documented specific wishes for their life and death.  My mother unexpectedly died in her sleep on September 24th, 1994 at the age of 77 – something she had wished and hoped for her entire life – who doesn’t?  My father died on October 13th, 2007 at the age of 89 from complications of Alzheimer’s and cancer.  There was no guessing when it came to the time when us three adult kids rushed to his bedside.  He was comfortable in his death, and we honored him by following his wishes for no intervention.  Did I want my dad to die?  God no.  I wanted him to live forever; but none of us gets to do that, so I’m glad that my father was allowed to take his last breath and leave this world his way.

Evil undercover: Alzheimer’s, Abuse, and the Elderly

Alzheimer’s and the Elderly.

I’m attaching the above article from a fellow blogger.  He, like so many of us, find it difficult to fathom how anyone would take advantage of a vulnerable human being.  The very unsettling fact, however, is that incidents of abuse of the elderly occur and are far too common.

Whether the abuse is instigated by family members upon the elderly in the privacy of their home, or by “professionals” in long-term care settings such as assisted living facilities, nursing homes, or group homes – it happens.  Oftentimes such incidents go unchecked for months, or years, and are discovered only when a death occurs, or when someone with a conscience steps forward and complains to the authorities.  Those being abused either don’t have the ability to complain or they fear that doing so will make matters even worse for them.

Worse?  Residents fear that if they complain, they’ll be thrown out of the place in which they live – the place in which they receive the abuse.  I know that you and I are quick to say, “Fantastic!  What a great relief that would be if the person no longer lived with his or her abusers!”  We say that because we have not experienced what they have experienced; we have not heard the threats and vicious statements directed towards these vulnerable human beings.  These violated human beings don’t understand that abhorrent behavior is not normal because it’s all they’ve known.

These are older human beings who at one time were innocent children showing up on their first day of school; worried teenagers fretting over what to wear to the prom; young adults heading off to college and/or a career; husbands and wives, moms and dads … people just like you and me.  Now they’re nothing but broken, barely alive bodies who have been treated worse than a junk yard dog.

That makes me mad.

Pooped in your pants lately? How’d that feel?

Were you eating breakfast in bed at the time? 

Or perhaps while sitting in the easy chair next to your bed, you tried your very best to ignore the urge to purge … but you couldn’t wait any longer for someone to assist you so you let it all out, leaving you in a shameful way, sitting in a mushy pile of excrement while a stream of urine puddled at the base of your chair.

Welcome to the life of a vulnerable adult living in a nursing home.  From coast to coast across the United States skilled nursing facilities (SNF) are filled with adults needing the greatest amount of assistance with their activities of daily living (ADLs) – toileting is one of those ADLs.

The following true scenarios occurred recently at a nursing home in a Seattle suburb, and at a similar facility in a suburb of San Francisco.

A handicapped toilet in South San Francisco, C...

(Photo credit: Wikipedia)

A man who is fully reliant on mobility assistance pushed the call button near his bed to register a need for assistance.  In this case, he needed to go “Number 1” and “Number 2” and had the audacity to require assistance while the staff was busy attending to other residents’ needs – but not his needs.  When a staff person finally entered his room an hour later, she did so to simply indicate that she didn’t have time to take him to the bathroom so he should just go in his pants.

A woman equally as vulnerable needed the assistance of a staff person upon waking in the morning and – knowing that breakfasts were brought around to the rooms at 7 a.m. – the 91 year old started to press her call button at 6 a.m. hoping to have her morning pee prior to the arrival of her breakfast tray an hour later.  That “luxury” was one that would not be afforded her; instead, a caregiver brought a breakfast tray to this patient in the seven o’clock hour and when the patient asked if she could receive help to the toilet prior to eating her breakfast, the employee told her to just go in her pants because no one had time to help her at that moment.

I can’t help myself – here’s another incident:  A staff person helps a woman to the toilet first thing in the morning.  The woman who is clothed in a lightweight nightgown finishes using the toilet and is ready to receive assistance back to her bed – but lo’ and behold, the staff person forgot to place the call button within close reach of the patient so she is not able to alert someone of her desire to go back to bed.  Enough time has passed that by this time the patient is shivering and screams for help – screams that went unnoticed for a quarter hour.  In desperation this elderly woman somehow managed to lean far enough forward to push over a metal trash pail which she then kicked repeatedly until someone finally arrived to see what all the commotion was about.

These stories don’t paint a very pretty picture do they?  They depict a low quality of life that no one deserves.

What does Quality of Life mean to you?

  • Eating at fine dining establishments?
  • Having a clothing wardrobe that rivals the catwalks of Paris?
  • Driving in a luxury vehicle that provides amenities previously only found in limousines?

For most of us, quality of life boils down to leading a dignified existence in which we are allowed to take advantage of the basic necessities of life.  For me, those necessities should include a safe living environment, sustenance, the inclusion of loving family and friends in my life, the freedom to make choices about matters that are important to me, and being on the receiving end of respectful behavior from those with whom I come in contact.

The most vulnerable among us should expect no less than those basic necessities, but “the system” isn’t working to guarantee those basics.  Try to imagine, if you will, your own grandparent, parent, spouse, partner, or other family member in any one of the above scenarios.  How comfortable are you with that type of day-to-day existence for them?  You’re not comfortable at all – as a matter of fact you’re feeling a bit uneasy about this whole subject matter.  I’m sorry to place doubt in your mind about the care your loved one is receiving but I’ll just bet that you need to get out of the comfort of denial you’ve been enjoying and into the eye-opening role of resident advocate.

Lack of caring = lack of care.  Nursing home management is a tough job to do correctly, but I know it’s possible because there are some reputable and well-run facilities out there – not perfect by any means, but fairly acceptable.  So yes, some nursing facilities employ stellar care staff but there are also those employees who just don’t give a damn.  “I go to work.  I go home after work.  I get paid.  What more do you want from me?”  Caring – that’s what we want.  You’ve chosen to work in this particular type of environment so don’t act like you didn’t know what you were getting into.  Withholding proper care for those who have no recourse but to depend upon you is not only unfair, but it’s illegal.  And how about answering these questions about your own aging prospects: Do you think you’ll somehow skip the journey into old age?  Do you not realize that you too will be as old as the patients whose care is entrusted to you?  What type of care will you hope to receive?  Does it resemble any of the scenarios I’ve illustrated above – or are you under the impression that you’ll be at a “Champagne and Chandelier” type of place where you’ll be waited on hand and foot?

Not gonna happen.

This article just scratches the surface of the sub-standard care that can be found in nursing facilities.  I only mention the toileting issue because it’s been front and center in my experiences with some of my acquaintances lately.  One place to start getting some positive traction where these matters are concerned is the National Long-Term Care Ombudsman Resource Center where you’ll find links to advocacy programs in your state.  Call those local representatives and report any concerns you may have about how your loved one is being cared for, or not cared for, in their nursing facility, assisted living facility, or group home.

If you act on behalf of your loved one, you’re also acting on behalf of everyone else in the facility because trust me – your mom isn’t the only one being neglected on her nursing home floor.