Category Archives: Senior Housing

June 21st: The Longest Day Alzheimer’s Style

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

Sunset in RedmondWhat was your longest day like?

Was it long, because it was fun-filled and absolutely fabulous, or was it long because the day was crammed with the most difficult and stressful experiences of your life?

Caregivers: you are heroes to all who understand the job that you’ve taken on as carers for your loved ones.  You live the 36-hour day with all of its burdens and insurmountable challenges, while across the United States there’s much discussion – even controversy – over raising the minimum wage.  In contrast, there you are earning no wage but working harder than you’ve ever worked before.

Loved ones with Alzheimer’s or other dementia: your disease-controlled days might seem to have no beginning or end; you go about your day trying to fulfill its challenges while perhaps being at the stage in your disease where you are still able to feel the frustrations of not grasping the how-to of tasks that prior to your diagnosis required no complex thought processes on your part.

Those who have yet to be intimately involved in the above-mentioned roles: look around you – you won’t have to look far – and then on this year’s longest day, Saturday, June 21st, do what you can to help the co-worker or neighbor who desperately needs your help but doesn’t know how to ask for it, or is too ashamed to admit that they can’t do it all.

Jerry and his new rideWhen you offer help, please don’t leave it open-ended.  Instead of saying to your neighbor, “Hi yah, Joe.  Be sure to call me if you need anything,” be more specific so it’s easier for Joe to accept your offer, “Joe, when I get out my lawnmower this weekend, I’d love to swing by your place and take care of your lawn so you won’t have to.”  Or how about, “Yah know, we’re always making more food than we can eat at our house so we just freeze the leftovers for another time.  Can I come by later this week and give you a week’s worth of meals so you don’t have to concern yourself with what to fix for dinner?”

And then keep it up because your neighbor or co-worker’s life isn’t going to get any easier.  Keep offering tangible ways in which to provide assistance and you’ll go a long way towards making the longest day – which is every day in the life of a caregiver – a bit easier to tackle.

 

 

Delivering the best customer experience

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

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

Photo credit: www.definefishstudio.com

Photo credit: Rob Owen-Wahl

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

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

Assisted living apartment. Photo credit: Vyolett

Assisted living apartment. Photo credit: Vyolett

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

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

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

Dining room at my dad’s memory care facility.

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

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

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

Alzheimer’s shifting personality

Little Did We Know.

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

Sundowner time

Sundowner time

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

Caregiving and The 36-Hour Day

A Caregiver’s Day.

Caring for a loved one is a full-time job, as one of my fellow bloggers clearly illustrates in the attached article.  Please read her article, especially if you’re not quite aware of how full the carer’s day can be.

My father died of Alzheimer's 10/13/2007. I'm on the left, then my hubby, then my brother.

My father died of Alzheimer’s 10/13/2007. I’m on the left, then my hubby, then my brother.

There’s a reason why the book, The 36-Hour Day (now in its 5th edition) is so popular with health professionals and family caregivers.  The subtitle for the book reads, A Family Guide to Caring for Persons with Alzheimer’s Disease, related Dementias, and Memory Loss.  As the former caregiver for my father who died from Alzheimer’s in 2007, I can verify that whether you are providing hands-on care or managerial long-distance care for a loved one, your job never ends.  A normal day is a relative term that changes with every day or hour – or as is sometimes the case – every minute.

My article, A normal day, caregiving style, throws a spotlight on how a patient’s and caregiver’s life changes once a diagnosis has been delivered.  The concept of normal is an ever-changing paradigm where the sand on the beach shifts so much, one can barely hold herself upright.

I celebrate all caregivers who manage this extraordinary task so well, and so devotedly.  You are a hero to many.

You are a hero to me.

Advocacy for long-term care residents

Alternate Title:  Give me a damn beer!

Lately I’ve read various blog posts mentioning that employees of long-term care (LTC) facilities are routinely disregarding the rights of their residents.  What’s that you say?  You didn’t know that when these older folks walked through the doors of a facility, thus giving up their cherished long-term independence, they actually gained rights that they never had before?  Here’s some information that will benefit you and your loved ones.  I’ll explain by way of providing a few examples:

  • Charlie moves his mother into a facility and the head of Health and Wellness strongly suggests that he not visit her for awhile so she can adjust to living in a different environment.

WRONG!  If mom wants her son to visit her, Charlie should ignore the “advice” of the H&W employee and visit mom as often, and as long, as he and his mom wishes.  Logic: What do you think benefits mom most?  The calming presence of her son who has been the only constant in her life, or the absence of any person or thing that would lessen the feeling of abandonment in a strange environment?

  • June, who is confined to a wheelchair, is forced to go to an activity by facility staff.  Apparently June’s family has asked staff members to make sure that June gets out of her room and socializes with other residents.  On this particular day June would rather stay in her apartment and watch game shows on television.

Who wins this argument?  June should because it’s her life, and neither staff, nor family, can force her to do anything.  Logic: Doesn’t someone who’s lived at least 7 or 8 decades have the right to make decisions that are important to her?  Yes – and that right is protected by law.  Legal implications: June is reliant on others to transport her to and from places, therefore when she’s taken to the activity room against her wishes, the law considers that action as physical restraint because she is “stuck” in the activity room and in her chair, and not able to physically move herself elsewhere on her own steam.  Additionally, the facility is guilty of coercion – forcing June to do something she doesn’t want to do.

  • George joins his buddies in the dining room for lunch and orders a chili dog and a Bud Lite.  When the meals for him and his buddies are served, George’s chili dog has been pureed and his beer has been substituted with a glass of iced tea.

Scc dining room & Don setting up ADilemma: The server tells George that his doctor ordered a pureed diet because George almost choked on a roll at a nearby restaurant and he risks aspirating on his food.  The server then tells George, and anyone within hearing distance, that his doctor also said George should not drink alcohol because of his diabetes.

Rights infractions: The server talked about a medical condition in front of his buddies by mentioning two medical conditions: George’s choking hazard and his diabetes.  That’s a violation of his privacy rights.  George is aware of the choking incident – and he is also aware that alcohol may not be such a good idea because of his diabetes – but he is making an informed decision to eat and drink what he wants, knowing all the risks involved.  Solution: Oftentimes facilities are worried about liability in these types of situations – very understandable.  To resolve such a concern, all that is needed is to conduct a “care conference” in which the health & wellness director, George, and perhaps his doctor by phone, discuss the risks inherent with George’s decisions.  They can easily discern that George has weighed the pros and cons and that although he acknowledges that doctor’s orders have been issued, George decides to disregard said orders.  Care conference notes should indicate the gist of the discussion; perhaps everyone in attendance signs their name agreeing that what is written in the notes accurately reflects the points covered in the discussion, and then everyone should be happy and no lawyers need to be involved.

I strongly suggest that you contact the long-term care ombudsman in your state should you have any inkling that your loved one’s rights are being neglected.  Visit the National Ombudsman Resource Center (NORC) and join with them to advocate for your loved one.  Everyone deserves to be treated with dignity, and certainly all of you would agree that all people should have a satisfying quality of life regardless of ones’ age and residential environment.

Final thought: put yourself in your loved one’s position … what would you want done on your behalf?

Submitted by Boomer98053, a retired Certified Long-Term Care Ombudsman.

Medical tourism – Alzheimer’s style

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

An enlargeable relief map of Thailand

(Photo credit: Wikipedia)

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

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

That’s a decision unbearable in its emotional implications.

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

Life everlasting – is it a good thing?

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

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

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

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

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

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

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

Grandma and Grandpa pods

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

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

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

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

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

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

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

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

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

Disposable human beings

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

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

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

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

41,231 times

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

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

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

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

(Photo credit: Wikipedia)

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

Sex in long-term care dementia units

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

English:

(Photo credit: Wikipedia)

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

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

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

English: Gender symbols for homosexuality (les...

(Photo credit: Wikipedia)

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

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

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

A difficult but necessary conversation

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

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

My father in mid-stage Alzheimer's.

My father in mid-stage Alzheimer’s.

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

My mother and my daughter, circa 1977.

My mother and my daughter, circa 1977.

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

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

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

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

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

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

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

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

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

Alzheimer’s and the Elderly.

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

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

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

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

That makes me mad.

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

Were you eating breakfast in bed at the time? 

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

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

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

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

(Photo credit: Wikipedia)

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

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

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

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

What does Quality of Life mean to you?

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

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

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

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

Not gonna happen.

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

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

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.

presenting

(Photo credit: only alice)

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?