Category Archives: Senior Housing

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The last few days, however, mom was withdrawn, and more often than not, she slept through my visit.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

“Housekeeping!”

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

“You are Mrs. Ruth Milliken?”

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

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

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

********

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“My hands are tied, fair or not.”

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

42 CFR 483.13

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

(1) The facility must

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

(ii) Not  employ individuals who have been

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

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

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

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

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

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

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

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

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

 

 

 

 

 

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.