Long-term care residents’ rights: Part 2
I hope you have already had a chance to look at Part 1 of this series on LTC residents’ rights. Today’s topic focuses on one aspect of the admission process that oftentimes slips through the cracks unnoticed.
The case of the missing Kindle Fire
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
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
Did you ever get so busy that you received an award and didn’t go pick it up, and then you forgot that it was waiting for you? That’s me. Lori, one of my most favorite bloggers, has been writing her blog Let’s Talk About Family since December 2011. This fabulous person nominated me for the Best Moment Award in May of 2013. All I can say is that not “picking up” my award qualifies me for the Worst Moment Award, but I’ll try to make up for it with this post.
Lori’s blog family history starts with her mother’s failing health and death, and continues with her father’s life as a widower who eventually moves into an assisted living facility (ALF). Her blog is one that I never miss. You know how you can manage the notifications you receive so that you get a notification e-mail immediately, daily, or once weekly? Her blog is one of those that I receive immediate notifications – I can’t wait any longer! is the way I treat her blog. Thank you so much for opening up your life to us in the blogging world.
Rules for the Best Moment Award:
Winners post information about the nomination, thanking the person who nominated them, with their acceptance speech that can be written down or video recorded.
Winners have the privilege of awarding the next awardees (see below) The re-post should include a NEW list of people, blogs worthy of the award, and winners notify them the great news. Winners should also post the award badge on their own website.
What makes a good acceptance speech?
Thank the people who helped you along the way, be humorous if you can to keep the reader entertained and smiling. Provide inspiration that helps your story to touch the lives of others.
And here’s mine: I’m thrilled to be acknowledged as having something good to say from time to time. I don’t think I’m an excellent writer, but I do have lots to say and I’m quite willing to write up a storm. I’m the youngest of three siblings and the only one of us who has been involved in the lives of senior citizens – and everything that involvement implies – for close to two decades. I’ve always loved people older than me; I guess it gives me comfort knowing that I’m younger than someone else. My official responsibilities over the years involved: working in the senior housing industry both in the corporate environment and in assisted living/memory care facilities, being an Alzheimer’s Association caregiver support group facilitator, and a Certified Long-Term Care (LTC) Ombudsman for the State of Washington (an advocate for vulnerable adults living in LTC facilities.) I’m retired from active work but I am actively still involved in being an advocate for the vulnerable by writing my first novel – a project I hope to complete by end of this year. My novel focuses on the lives of family members who care for a loved one with Alzheimer’s or other dementia.
My nominees for the Best Moment Award are:
Kay Bransford, for Dealing with Dementia. The reason I enjoy Kay’s blog is best described by her blog’s subtitle: A family caregiver’s journey to deliver loving care with grace and humor. We all know there is absolutely nothing humorous about Alzheimer’s or other dementia, but humor can be found in the human interactions between caregiver and family member. If you look for them, you will find them. Kay, I’ll be posting my acceptance of a different award you recently nominated me for very soon. THANK YOU!
Dementia Poetry is an in your face journal of a daughter-in-law’s disease journey with her mother-in-law, in the form of extremely well-written poems. The subtitle for her blog is: The Politically Incorrect Alzheimer’s Poetry Blog.
Theresa Hupp’s blog, Story and History, is a moving journal of a family’s life covering past, present, and future. But that’s not all: Theresa is a fabulous, published author. I’d say I’m jealous, but friends, and that’s what I consider Theresa, don’t turn green with envy – at least they shouldn’t. Theresa, you nominated me for the Versatile Blogger Award in February of 2014, but I already received that award a couple years ago so I’m not going to claim it again, but I thank you profusely for nominating me.
Reflections on Dementia, Caregiving and Life in General is a must-read blog all the way from Singapore. This blogger takes care of her mother who has Alzheimer’s and vascular dementia. Her insights and her view of her world will engage you from the very first posting you read.
What a horrible title for an article.
It’s also a horrible concept, don’t you think?
But many with dementia are dead inside without any means of engaging with others in meaningful conversation. Heck, they might not even be able to talk to themselves: a practice I engage in quite frequently.
What an isolating state to be in: you’re there, but not there.
Fortunately, those with Alzheimer’s, dementia, or other cognitively restricting illnesses, have a chance to awaken their memories – and therefore their history – but not without the tools to do so. Alive Inside, the 2014 Audience Award winner at the Sundance Film Festival, is a one and a quarter hour documentary film that touts the benefits of personalized music therapy for those who are living dead inside.
Dan Cohen, social worker, Founder and Executive Director of Music & Memory, started this awakening project several years ago. Here is a description of the project, taken from the film’s website: “Music & Memory … promotes the use of digital music players with individualized playlists to improve the quality of life for elders, regardless of their cognitive or physical status … Dan has spent most of his career helping individuals and organizations leverage technology. Music & Memory operates in hundreds of long term care homes across the U.S. and abroad.”
Watch the 2.15 minute trailer on the provided Alive Inside website to witness a few of the individual awakenings spotlighted in the film.
Even if the film is not scheduled to appear in your area, you are still able to help awaken the millions of people in the United States and abroad by your participation in Mr. Cohen’s project. Whether it’s feet on the street or a click of a mouse to donate funds, each of you can become a part of these efforts.
Additionally, if you know someone, or are caring for someone with cognitive decline, put together a personalized database of music for that someone in a digital music storage device, then connect them to it with a set of headphones. You might be able to awaken him or her with that simple effort on your part.
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.
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.
What was your longest day like?
Was it long, because it was fun-filled and absolutely fabulous, or was it long because the day was crammed with the most difficult and stressful experiences of your life?
Caregivers: you are heroes to all who understand the job that you’ve taken on as carers for your loved ones. You live the 36-hour day with all of its burdens and insurmountable challenges, while across the United States there’s much discussion – even controversy – over raising the minimum wage. In contrast, there you are earning no wage but working harder than you’ve ever worked before.
Loved ones with Alzheimer’s or other dementia: your disease-controlled days might seem to have no beginning or end; you go about your day trying to fulfill its challenges while perhaps being at the stage in your disease where you are still able to feel the frustrations of not grasping the how-to of tasks that prior to your diagnosis required no complex thought processes on your part.
Those who have yet to be intimately involved in the above-mentioned roles: look around you – you won’t have to look far – and then on this year’s longest day, Saturday, June 21st, do what you can to help the co-worker or neighbor who desperately needs your help but doesn’t know how to ask for it, or is too ashamed to admit that they can’t do it all.
When you offer help, please don’t leave it open-ended. Instead of saying to your neighbor, “Hi yah, Joe. Be sure to call me if you need anything,” be more specific so it’s easier for Joe to accept your offer, “Joe, when I get out my lawnmower this weekend, I’d love to swing by your place and take care of your lawn so you won’t have to.” Or how about, “Yah know, we’re always making more food than we can eat at our house so we just freeze the leftovers for another time. Can I come by later this week and give you a week’s worth of meals so you don’t have to concern yourself with what to fix for dinner?”
And then keep it up because your neighbor or co-worker’s life isn’t going to get any easier. Keep offering tangible ways in which to provide assistance and you’ll go a long way towards making the longest day – which is every day in the life of a caregiver – a bit easier to tackle.
Delivering the best customer experience
Regardless of the industry you represent your goal must always be to deliver the best customer experience.
I 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;
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.”
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.
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
The attached article from a blogger that I follow contains extraordinary prose on how dementia can fool, frustrate, and reward, all in one sitting.
Please take the time to read her accounting of how Alzheimer’s has encroached on her family.
Caregiving and The 36-Hour 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.
There’s a reason why the book, The 36-Hour Day (now in its 6th edition) is so popular with health professionals and family caregivers. The subtitle for the book reads, A Family Guide to Caring for Persons with Alzheimer’s Disease, related Dementias, and Memory Loss. As the former caregiver for my father who died from Alzheimer’s in 2007, I can verify that whether you are providing hands-on care or managerial long-distance care for a loved one, your job never ends. A normal day is a relative term that changes with every day or hour – or as is sometimes the case – every minute.
My article, A normal day, caregiving style, throws a spotlight on how a patient’s and caregiver’s life changes once a diagnosis has been delivered. The concept of normal is an ever-changing paradigm where the sand on the beach shifts so much, one can barely hold herself upright.
I celebrate all caregivers who manage this extraordinary task so well, and so devotedly. You are a hero to many.
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.
Dilemma: The server tells George that his doctor ordered a pureed diet because George almost choked on a roll at a nearby restaurant and he risks aspirating on his food. The server then tells George, and anyone within hearing distance, that his doctor also said George should not drink alcohol because of his diabetes.
Rights infractions: The server talked about a medical condition in front of his buddies by mentioning two medical conditions: George’s choking hazard and his diabetes. That’s a violation of his privacy rights. George is aware of the choking incident – and he is also aware that alcohol may not be such a good idea because of his diabetes – but he is making an informed decision to eat and drink what he wants, knowing all the risks involved. Solution: Oftentimes facilities are worried about liability in these types of situations – very understandable. To resolve such a concern, all that is needed is to conduct a “care conference” in which the health & wellness director, George, and perhaps his doctor by phone, discuss the risks inherent with George’s decisions. They can easily discern that George has weighed the pros and cons and that although he acknowledges that doctor’s orders have been issued, George decides to disregard said orders. Care conference notes should indicate the gist of the discussion; perhaps everyone in attendance signs their name agreeing that what is written in the notes accurately reflects the points covered in the discussion, and then everyone should be happy and no lawyers need to be involved.
I strongly suggest that you contact the long-term care ombudsman in your state should you have any inkling that your loved one’s rights are being neglected. Visit the National Ombudsman Resource Center (NORC) and join with them to advocate for your loved one. Everyone deserves to be treated with dignity, and certainly all of you would agree that all people should have a satisfying quality of life regardless of ones’ age and residential environment.
Final thought: put yourself in your loved one’s position … what would you want done on your behalf?
Submitted by Boomer98053, a retired Certified Long-Term Care Ombudsman.
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.
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.
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.
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.
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?
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.
“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!
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
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 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.
Aging Well – Walking on Sunshine
Residents at the Hebrew Home and RiverWalk Do a Fun Video on Aging Well.
Whether you can walk, or not;
Whether it’s sunny, or not;
You’ll be Walking on Sunshine once you’ve viewed this video, borrowed from the Blogsite: http://www.alzheimersspeaks.wordpress.com
The Gift that Keeps on Giving – until it’s no longer needed.
Rev. Dale Susan Edmonds answers your questions about caregiving.
The above link, from a December 2012 NBC News report, addresses the conversations that many of us – well, many of you anyway – still need to have with your parents. (My mother died in 1994, my father in 2007 – those conversations have long since taken place.) In many respects, my brother and sister and I were fortunate because in our family, the topic of sickness and death seemed no different from discussing that night’s dinner menu – perhaps even easier. That’s just how it was in our household growing up. But I’m aware that universally, that is not the case.
In my article Cost of Dying: planning for a good death, from advance directive to talking with your family, I’ve attached an exceptional article about a few people’s experiences discussing how their loved ones want to die. By now I may have lost some of you, but bear with me. There’s a reason why I’ve chosen to address this topic.
GIFTS. Who doesn’t like receiving gifts? Most of us get a kick out of being handed a package with a fully wrapped surprise within and told to “open it!” “What, for me?” Yes – for you. Perhaps the gift is something we didn’t expect, or we’ve sufficiently hinted our exact wishes and finally someone gifted us with that long sought after item. Fun, isn’t it? Someone cared enough to gift you with something you’ve always wanted or you receive something that you didn’t know you wanted, but it turns out, you do!!!
THE GIFT THAT KEEPS ON GIVING. A few years ago, I succeeded in convincing my wonderful hubby that we needed to put together our “last wishes” which of course includes a Will, but more importantly, an Advanced Health Care Directive. My husband is one of those who isn’t exactly comfortable sitting around the dinner table – or any table for that matter – talking about death. I get that – I really do. So I couched this discussion by talking about what a gift my parents, and his parents, gave their families by specifically outlining what to do when it came time to do something.
When your loved one is heading towards the great beyond, it’s comforting to already have his or her wishes on paper and ready to execute – no pun intended. I’ll use my father as an example. My father died at the age of 89 on October 13, 2007. Official cause of death was prostate cancer but advanced Alzheimer’s was a huge factor in his death. There is no way my father would have a) survived cancer surgery; and b) even wanted cancer surgery at that stage of his dying. His Advanced Health Care Directive very clearly stated his wishes and us three siblings had copies of that document and respectfully went along with his wishes. Dad saved us the stress of making an extremely difficult guesstimate of what he would have wanted in the midst of that situation. His dying was already an emotional experience so I can’t imagine having some sort of discussion about when to stop treating his illnesses.
The legal document, drafted years earlier, was drafted for this specific time. Even if dad had been conscious – and he was not – his dementia would have prevented him from making a well-informed decision. If ever there was a time when dad’s gift was ready to be presented – this was it. That gift allowed us to spend our last hours with him simply loving him; singing to him; and telling him how grateful we were to have him as our dad. Beautiful.
You don’t have to wait until you are 50 years or older to put your wishes in print. Old people aren’t the only ones dying who require some sort of affirmative decision-making. Someone in their thirties could be in a horrific vehicle accident and end up lingering on the precipice of death. A forty-year old person could have a stroke and be on that same precipice. It’s never too early to do something about your exit from this world as we know it. You can always change your mind later – you decide that you do, or do not, want hydration, so you revise the document. That’s the beauty of word processing – it’s changeable, and once you get that revised version documented by witnesses, you’re good to go! Literally.
If you choose to use an attorney, you can go through the local Bar Association for referrals or you can attempt the same outcome by doing it yourself. Many office supply stores have boiler plate legal documents you can readily purchase – but be certain to purchase the forms that contain the required legal verbiage for your state or territory. Additionally, organizations such as Compassion and Choices provides forms that you can download from their website, even a form that has a Dementia Provision. Who woulda thunk? Not me.
The Holidays may be over, but the season of gift-giving is not. Won’t you consider giving your loved ones one more gift this year?
The Journey of Grief: A Personal Snapshot
The Journey of Grief: A Personal Snapshot.
Grief – when one experiences a loss, there is no way around this emotion. It has no clearly defined end. It manifests itself differently for every individual. The writer of the above article shares the personal side of how this emotion presented itself in his own life in this continuation of his series of articles on grief.
This “personal snapshot” is a follow up to his first article in the series that addressed an event in ones life for which everyone’s grieving experience takes on a slightly different character. I hope you’ll read the article attached above, and his previous article – also available on his website.
Lighten up Mondays.
One evening, a family brought their frail, elderly mother to a nursing home and left her, knowing that after all the research they did to find a great place, she would be well cared for.
The next morning, the nurses bathed her, fed her a tasty breakfast of an omelet, sausages, and pancakes, and set her in a chair at a window overlooking a lovely flower garden.
She seemed okay, but after a while, she slowly started to lean over sideways in her chair. Two very attentive nurses immediately rushed to her side to catch her and straighten her up. Again, she seemed okay but after a while, she started to tilt to the other side. The nurses rushed back, and once more moved her upright. This went on all morning.
Later the family arrived to see how their mother was adjusting to her new home.
“So Ma, how is it here? Are they treating you alright?”
“It’s pretty nice here,” she replied, “except they won’t let me fart!”
New roommate paradigm: adult children & their parents.
Historically, it’s the adult children who move back into the parents’ home, oftentimes because of financial issues. Apparently that is no longer the sole definition of multi-generational living.
In a USA Today article, Who’s moving in? Adult kids, aging parents, Haya El Nasser writes, “(A)bout one in seven say they already have a ‘boomerang kid’ – an adult child who moves back home – or elderly parent living under their roof.”
This brings about two unexpected events:
- The parents who enjoyed their empty nest and started to reestablish themselves as a couple, instead of just as parents, suddenly have an adult living with them who just happens to be the kid they gave birth to 30 years ago; or
- The adult child who strove to establish his home with his spouse and their 2.5 kids suddenly have a parent living with them requiring just as much attention, if not more, than the young children they themselves brought into this world.
The USA Today article above focuses on a rising trend towards families deciding to purchase larger homes than they would have previously considered with the anticipation that it would be more economical to have other adult family members living in – and contributing to – the same household. Talk about a paradigm shift! Stephen Melman, director of economic services at the National Association of Home Builders says, “I remember when I was in college, no one wanted to be near their parents.” That thought certainly resonates with me. When I was single in my 20s and early 30s there was no such luxury of renting a place on my own and living-at-home was definitely not an option. At one time I had two roommates so all three of us shared the same bathroom, kitchen and common living space. Inconvenient and not as private as we would have liked? Certainly – but the only way to afford housing and have the ability to put away money for our future was to split costs with other like-minded adults.
A Pew Research report earlier this year showed that “the share of Americans living in multi-generational households is at its highest since the 1950s.” OMG! As a Baby Boomer who was born in 1953, I just have to repeat, “OMG!!!!!”
My focus today is on the caregiving issue – that adult children and/or Baby Boomers find themselves with the added responsibility as caregiver to a loved one. In my article Start your retirement – start your job as a family caregiver I address the caregiving aspect of Baby Boomer retirement which sometimes evolves into multi-generational living. Our quality of life definition tends to change as family caregiving is added to our lives. But it’s a fact of life for many of us and one that very few can escape. But herein lies the problem…
Most of us aren’t prepared for that eventuality. Those of us who are counting the days until retirement kid ourselves into believing that caregiving happens to others, not to us. And our adult children find it difficult to wrap their minds around that type of living scenario whilst in the midst of their hectic career development and ever-changing family dynamics.
So what happens? We find ourselves in an emergent situation that requires immediate action that may not be well-thought out because we don’t have the time to make a well-informed decision. We all know that the worse time to make a life-changing decision is in an emergency. There is a wealth of information available at our fingertips – the worldwide web is replete with helpful resources. Even this website has many articles written on the subject. As you browse through this website’s categories, be sure to enter a search term in the “Search My Site” box located at the right-hand side of each content page.
I’m not suggesting that you finalize plans that might not be implemented until many years down the road – or at all. What I am suggesting, however, is that we all become aware that a) these issues exist and could very well happen in our own lives; and b) we’re going to do what we can now to make wise decisions later.
The Sunday Family Visit at an Assisted Living Facility.
Another Sunday Family Visit at the Assisted Living Facility.
This article, written by a fellow blogger, is beautifully descriptive and paints a clear picture – not just of the visual scene – but also of the emotions that exist in those who step into the world of their loved one with Alzheimer’s and other dementia.
The two poignant themes that resonate with me are: the development of resident boyfriend/girlfriend relationships within a memory care community; and the wonderful interaction between a great-grandson and his great-grandpa with cognitive difficulties.
I honor this blog author and her family for choosing to integrate a youngster into what could be a scary or challenging environment for a child. One of my articles, “Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia,” addresses the difficulties that families oftentimes experience in long-term care (LTC) settings. I can see that this family already figured out how to soften the hard edges to make the visiting experience beneficial to all.
Lighten Up Mondays.
A man moved into a nursing home.
He soon noticed that a woman was constantly staring at him. After a few days, he approached her and asked,
“Ma’am, why have you been staring at me all the time?”
“You look just like my third husband,” she replied.
“Well, how many times have you been married?” he asked.
She answered, “Twice.”
Important Article on Hiring a Caregiver Privately
Important Article on Hiring a Caregiver Privately.
The senior care industry is a dangerous maze wherein even the well-educated and well-intentioned providers of care fail to put any “care” in their caregiving. Whether at an assisted living facility or at home with private care, the path of least resistance is oftentimes the one taken and the accompanying attitudes reflect such feelings: “Man, I just gotta get over this shift! These people are driving me crazy!” “I know, I’ll just stick her in front of the TV while I catch up on my Facebook posts/soap operas.”
Don’t worry everyone – I’m not saying that there are NO ethical, compassionate caregivers, there definitely are – but attention must always be focused on those who don’t provide stellar care because the vulnerable amongst us are at the mercy of their care people. Those hidden in a private home are the most susceptible. Why? Because there are very few sets of eyes observing the day-to-day happenings. At a facility, the existence of ongoing traffic – family members, visiting ministries, long-term care ombudsmen/advocates – provides some sort of monitoring that a private home does not and can not provide.
The attached article – link above – is quite thorough. Please take the time to review it.
Baby Boomer gray divorce – I’m just not gonna take it anymore!
Kind of like the movie “Network” in the iconic scene where the actor Peter Finch, as Howard Beale, says, “I’m as mad as hell and I’m not gonna take this any more!”
What is often left out from that quote is the statement made just prior, “I’m a human being. My life has value.” I think some spouses in their 50’s through their 80’s decide that after decades of a somewhat dissatisfying, or perhaps an abusive, marriage they realize that they have a whole lifetime ahead of them and decide that they deserve better. In an article from the AARP June 2012 Bulletin, one of the reasons for a late-in-life divorce centers around the fact that longer lives mean more years with an incompatible spouse. And even though the overall divorce rate in the United States has decreased since 1990, it has doubled for those over age 50.
Jay Lebow, a psychologist at the Family Institute at Northwestern University says, “If late-life divorce were a disease, it would be an epidemic.”
Wow!!!! I had no idea! I’m fortunate in that my second marriage at the age of 47 is still one in which I am very happy now twelve years later. There are those, however, with whom I am acquainted who stick to the dictum of “in sickness and in health, until death do us part” even through an abusive relationship (verbal, physical or otherwise) and, because they’ve been in it for the long haul, e.g., 30 plus years, they feel that they have no choice but to stay.
Why do those with abusive spouses – both male and female – cling to their marriage?
As I mentioned above – one reason is certainly the commitment to vows that were made at the height of a romantic relationship. And there are other reasons. An excellent therapist with whom I am acquainted who leads support groups for the abused told me that over the years, as abuse has prevailed in the household, the one being abused adjusts to each added level or intensity of abuse and becomes acclimated to each added degree. Added to this unwarranted commitment to their abusive spouse, they fear the unknown, even though it may bring about an abuse-free life. And without the help of good friends and powerful resources, a spouse in an abusive relationship may not have the tools that will give them sufficient confidence to make a decision that will benefit them the remainder of their life.
Divorcing later in life can often result in less time to recover financially, recoup losses, retire debt, and ride the ups and downs of the economy.
Some Baby Boomers out there have relished the security that their spouse or significant other has provided them in the form of financial stability. They’re thinking that perhaps it’s worth putting up with this person with whom I am incompatible to guarantee a comfortable enough life until one of us dies. Well – certainly that is a factor – but I personally believe that an individual’s life contains far more value than any bank account can provide. If someone is feeling devalued in their relationship, they have short-changed the remainder of their life. And if someone truly craves, absolutely longs for greater self-worth, nothing will stop them from satisfying that need. I guess you have to look at the options and determine if you’re willing to go with it:
living in a mortgage-free home without financial concerns with someone who tears you down, or renting a one-bedroom apartment with thrift store furnishings, that frees you from a relationship that has prevented you from being your true, and valued self.
But who will take care of me in my old age?
A 2009 National Alliance for Caregiving/AARP survey found that 66% of caregivers were female, with women providing on average 22 hours per week vs. 17 hours for males. In a divorce situation, “older men may make out better financially than women, but they don’t fare so well at finding someone to take care of them when they’re older. They often don’t have alternative care networks the way women do,” says Andrew Cherlin, a sociologist at Johns Hopkins University. When asked who they will turn to when they’re older, single men often cite paid help – a pricey and somewhat difficult option to find. Some older divorced people have children or other family members who can assume the caregiving role, but not everyone does.
Gray divorce is occurring and there are certainly many factors to consider. I guess I’m of the belief that a bad marriage is not better than living alone. Whether you’re a Baby Boomer – or of any other generational group – only you can decide what you’re willing to sacrifice in order to obtain your sense of personal value. As far as I know, we’ve only been given this one life. This is not a dress rehearsal and there are no do-overs.
Seattle Times: Seniors for Sale, Part 6
In yesterday’s post, a Seattle Police Detective defined elder abuse as:
- sexual abuse
- physical abuse
- financial exploitation
In Part 6 of Seniors for Sale: Placement perils and successes, Michael Berens, Seattle Times reporter, delves into the senior housing placement industry, focusing on one placement company that placed a client in a Tacoma-area Adult Family Home (AFH) with a history of safety and health violations – elder abuse – even a fatal event, but because the placement company had not done its research, it was not aware of the home’s previous infractions and kept placing unknowing vulnerable adults in the home’s care.
Many of these placement service companies operate state-wide and/or nation-wide, and believe that there is no way that they can help as many people as they do if they are required to visit each and every home/assisted living option available to the public that they are trying to assist. These companies are oftentimes characterized as Bed Brokers – an industry that is growing exponentially without much scrutiny or State controls.
CAVEAT: Just as in every assisted living situation – there are good senior housing options and there are bad senior housing options – so too there exist reputable senior placement companies, and not-so-reputable placement companies.
I personally think that these companies can be helpful to those looking for a senior housing option that suits their, or their loved one’s, needs. I caution those using these agencies, however, to understand that not every option out there is listed with placement companies. If a senior housing company does not choose to be listed with a placement service company, that option will not be offered, even if that particular housing option might be the very best choice for some families: cost-wise, location-wise, and even service-wise.
In a news update, Michael Berens’ article, State gets tough on referrals for elder care, we see that attention is now being directed at these placement referral companies in the hopes that those they serve – vulnerable adults in need of some sort of daily care – are protected from those companies who are simply aiming to make a profit at the most vulnerable time in an elder’s life.
As I mentioned in previous articles found in my blog category, Senior Housing, there are numerous resources available for those looking for senior housing for themselves or a family member. Please go to that category and type in a search term in the space located on the right-hand side of the page to find the topic that interests you most.
Seattle Times: Seniors for Sale, Part 5
Part 5, of Seniors for Sale: Hiding Harm: the human toll, is one example of the lack of reporting that goes on in some assisted living residential settings – in this case – an Adult Family Home (AFH).
When you watch the video link above, you’ll be shocked at how a particular accident happened – and its after effects on the victim – and you’ll be horrified at how long it took before it was reported to the police.
Perhaps this statistic will provide a partial explanation:
only 16% of all incidents of elder abuse are reported.
Not only are many caregivers not reporting incidents of abuse that occur; surprisingly, family members fail to get beyond the denial stage when they discover that their loved one just might be in danger in the very location entrusted to his/her care. They can’t believe that the caregiving solution they found for their loved one has turned out to be disastrous in every way.
The police investigator for this case states the following:
We don’t tolerate domestic violence, but that’s not always the case with elder abuse.
The final episode of Seniors for Sale will be submitted tomorrow, Saturday.
- ← Previous
- Next →