Tag Archives: long-term care

My novel experience with Alzheimer’s disease – Part 1

Two of my family members were diagnosed with Alzheimer’s or other dementia:

  • My father received a diagnosis at the age of 84 and died of the disease at 89; and
  • Three months after my father’s death, my sister-in-law was diagnosed with mixed-dementia at 65 years of age and died four and a half years later.

With that type of history and personal experience with the disease, I had no choice but to put my thoughts down on paper which has turned into my first attempt at writing a novel. Those of you who have read articles from my blog on an ongoing basis know quite a bit about my caregiver role for my father and my supportive role for my brother’s caregiving journey.  You’re also aware that my work history the past 14 years includes assisted living and memory care work; being a Washington State long-term care ombudsman (advocate for vulnerable adults); and an Alzheimer’s Association caregiver support group facilitator.

???????????????????????????????I’m lucky to have the time and opportunity to work on my craft.  Thanks to my hubby’s generosity, I have no excuse but to write; so I do.  Here’s an excerpt from the very beginning of my manuscript.  I’d like to hear your impressions.  ALL feedback is valuable…

Colleen has just a couple items to purchase at the grocery store, so after picking Patrick up from his morning day program, she secures him in his seat and heads to the mega-grocery store.  “I promise we won’t be too long – we’ll be home in no time at all.”  Patrick doesn’t register any complaints and seems quite content simply sitting and watching the world go by from his seat’s viewpoint.

Colleen is in luck; there’s a parking space not too far from the entrance so she grabs it before any other shopper notices this great find.  With the back-to-school sales in full force, she figured she’d end up in what she calls “the Back 40″ of the store’s parking lot.  “Not this time.  I must have done something right in my life!”  Colleen secures the parking brake, grabs her purse and rushes over to the other side of the car to retrieve her passenger.  “Okay, handsome!  Let’s head into the store.”  Colleen frees Patrick from his seat, and holding tightly to his hand, the two take baby steps across the parking lot crosswalk, requiring other drives to pause in their shopping rush.  As is usually the case in this friendly Oregon town, the drivers were very courteous, even smiling and waving at the two of them.  Colleen is relieved that no horns are honking – a sound that always frightens Patrick.  She and Patrick wave at the drivers, Colleen mouths a “thank you” as they reach the end of the crosswalk, and as she enters the store, she grabs a plastic shopping basket in one hand, and keeps hold of Patrick with the other.

“Let’s head to the toiletry aisle first.  We’re just about out of that bath soap that you like.  How does that sound?”  Patrick breaks into a smile, nods his head, and says, “My soap.  Let’s go!”  Colleen puts one bar in her basket and hands another bar to Patrick and asks, “Would you like to carry this bar for me?”  Again, Patrick breaks into a smile, holds his hand out, takes the bar from Colleen and holds this precious cargo to his chest.

Colleen sees the baby shampoo they need at the end of the aisle and turning to Patrick says, “You stay here.  I’m going to get your shampoo and be right back.  I’ll only be a few seconds.”  Colleen lets go of Patrick’s hand and on the way to getting the shampoo, briefly stops to pick up a couple items, tossing them into her basket.  Now at the end of the aisle, she grabs a bottle of shampoo and places it in the basket with the rest of the items.  Turning back towards where she left Patrick, she says, “Here I come, just as I promised!”  But Patrick isn’t where she left him.

“Oh no, where are you sweetie?”  Colleen quickly walks to the next aisle; no Patrick.  She rushes to yet another aisle; no luck.  “No, this can’t be happening!”  Patrick is nowhere to be found and she doesn’t know whether to go left to the housewares section or right to the grocery section.  Fortunately a store employee notices her distress and asks if he can be of assistance.

After giving the employee Patrick’s physical description, and the fact that he would probably be holding a bar of soap, Colleen and the employee split up, both going in opposite directions shouting Patrick’s name.  In her shouting, Colleen adds, “The time for hide-and-go-seek is long past!  Let me know where you are!”  Colleen makes it to the far right of the store, stumbling into the Produce section, when she hears an announcement, “Colleen Strand, please report to the Customer Service Desk at the front of the store.”

Colleen drops her basket of toiletry items and runs to the front of the store where the helpful store employee and Patrick stand at attention – both with a smile on their face and both giving Colleen the “thumbs up” sign when she reaches them.  “Dad!  I’m so glad this nice employee found you!  I lost you.  I’m so sorry I left you alone.  Are you okay?”

Patrick places his free hand on his daughter’s shoulder and says, “I thought I saw someone I knew.  I was wrong, then I didn’t see you, but we’re together now.”  Patrick looks at Colleen’s hands and seeing them empty asks, “Where have you been?  I thought we were going to shop.”  The store employee agrees to stay with Colleen’s father while Colleen retraces her steps to gather up her basket of dropped items.  She uses this time to calm down, and shaking her head she mumbles, “Note to self: never leave someone with Alzheimer’s alone in a store for even a couple seconds; no turning your back; no getting distracted; focus, focus focus!”

The remainder of Colleen’s visit with her father at the assisted living facility in Eugene, Oregon went smoothly and although she remained a bit shook up for a couple days, her father completely forgot about their grocery store caper.  He even complained that it had been a long time since Colleen had taken him grocery shopping.  In this instance, memory impairment showed its upside – her father completely forgetting the mishap for which she still felt guilty.  Nine times out of ten, however, her father’s memory loss only had a downside because the good times they spent together were lost to him as well.

I look forward to hearing your feedback.  I’ll give you another sample, this one from a couple hundred pages into the manuscript, next Tuesday.

 

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.

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.

Baby steps towards Alzheimer’s diagnosis

Amyloid Scanning Protocols Fail to Get the Nod from CMS.

I like the above article and every single article that mentions some sort of steps moving towards diagnosis and treatment, even steps that are stunted right out of the block.

Stillness gets us no where.  Although limited, at least this article discusses some progress towards shutting down Alzheimer’s and other dementias.  During a time where very little good news is forthcoming relating to this disease, I’ll take anything – thank you very much.

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.

Long-term care (LTC) insurance policies: Rejection hurts.

An insurance agent from a large, widely-known insurance company recently told me that 50% of all applicants for long-term care (LTC) insurance are rejected.  Boy, with those statistics, it’s hardly worth pursuing, knowing that the hurt of rejection might be in your future.

John Matthews, Caring.com senior editor and attorney gives all of us a reality check:

“No one has a ‘right’ to buy long-term care insurance.  That results in insurance companies refusing to sell policies to people they think are likely to collect on the policies soon, or who might collect for a long time.  If an insurance company thinks the odds are that it might not make money on you, it won’t sell you a policy.”

WOW – that’s encouraging isn’t it?

While doing research for this article, I found the information provided by insurance brokers about LTC insurance was very enlightening.  Apparently many LTC insurance companies will accept you as an insured if you have had open-heart surgery, but will balk at covering someone who has arthritis.  Why you may ask?  I was told it is because the insured with heart issues will die before needing benefits whereas the person with arthritis will most likely become disabled and therefore cost the insurance company too much money in benefits payout.

Wow – that’s depressing, and somewhat maudlin, isn’t it?

I stand by my earlier article, Long Term Care Insurance Scares Me.  Insurers are trying to sell a product for which so few are eligible.  I thought I was scared before.  Now that I’ve done my research, I’m petrified!

Please share your experiences trying to obtain LTC insurance.  Whether you were accepted or rejected – we want to know.  If you were rejected and appealed the insurance company’s decision – we REALLY want to hear about it.

Moving Mom and Dad – or your spouse.

Moving Mom and Dad – Leaving Home is an article from the June/July 2012 AARP Magazine.  Statistics on aging are astounding, and scary.  “By 2020 some 6.6 million Americans will be age 85 or older.”  That’s an increase of 4.3 million from the year 2000.  Time to celebrate – right?  We’re living longer – and in some cases – thriving in our older age.  The reality of the situation, however, is that eventually we’ll need some sort of assistance with our activities of daily living (ADLs) that might require a move to a care facility of some sort.

The stories presented in the attached article describe family instances where emergent circumstances warranted an emergent decision to move a parent into some sort of care facility.  The best case scenario, as this AARP article suggests is that you, “dig the well before you’re thirsty.”  Nice sentiment – but not always possible.

I have written numerous articles for my blog that address the difficulties the caregiver, and the one needing care, go through when making the decision to choose a long-term care (LTC) facility for a loved one.  Below are links to each of those articles.  I hope they prove beneficial to you.

Deathbed promises and how to fulfill them.

Caregiving: The Ultimate Team Sport.

Selecting a Senior housing community – easy for some, not for the rest of us.

Avoiding the pitfalls of selecting Senior Housing.

Adjustment disorder: a long-term care facility side- effect.

Be an advocate for your aging loved one.

Visiting a loved one at a long-term care facility.

Caregiver guilt.

Long-term care facility heartache.

More often than not, a senior citizen moving into a long-term care (LTC) facility is doing so under duress.  “My kids said they’re not comfortable with me living on my own anymore.  Well I’m not comfortable living in this old folks home!”

SENIOR CITIZENS FIND THAT NEW ULM, MINNESOTA, ...

(Photo credit: Wikipedia)

Sound familiar?  It should.  I am a LTC Ombudsman in Washington State and I can’t tell you how often I hear residents who provide nothing but negative comments about their living conditions.  Regardless of how good the building; regardless of how fabulous the food; regardless of all the fun activities in which the residents participate, they are still not happy because the overriding dissatisfaction of not being in control of where they want to live colors all that they do.

And I agree with them.

Losing control and losing independence – a natural outcome of getting older?  Gosh, I hope not.  For the most part, a person moving into a long-term care facility has been in charge of their life – managing finances, choosing when and where they want to drive in their vehicle, eating whatever they want, whenever they want – in short, doing whatever they damn well please!  Suddenly someone else, regardless of how well-meaning, takes those freedoms away and those choices because they’re not comfortable leaving mom and/or dad alone in their own house.

English: Alarm clock Polski: Budzik

In my article: “Adjustment disorder: a long-term care facility side-effect,” I talk about the difficulties that befall the elderly as they endeavor to acclimate to senior living.  Think about it!  Going from a schedule-free life to a regimented one is difficult – whether you’re a young adult going into the military, or a senior citizen moving into an institutional living situation.  Both generations suffer greatly during this adjustment period but the adjustment takes longer when you’re in your late 70’s and upward.  And don’t forget, if the senior citizen wasn’t the one making the decision – choosing to move out of her home and into a senior housing community – the adjustment period will take longer still.

How can the adjustment period be made easier?

As advocates for residents in long-term care living situations, LTC Ombudsmen  emphasize and promote a resident’s right to make choices about pretty much everything that goes on in their new “home.”  What a novel idea!  Some of the choices that we know are important to residents are:

  • Choosing the clothes they want to wear.
  • Choosing what time they want to go to a meal.  Even if the resident wants breakfast after posted dining room breakfast hours, the culinary staff must make reasonable accommodation and provide some sort of breakfast item for that resident.
  • Choosing which activities – if any – in which the resident wants to participate.  No one should be forced to go somewhere against their will – that’s called coercion.  “Come on sweetie, you’ll like it once you get there.”  No!
  • If the resident is on some sort of care plan in the facility, the resident has the right to refuse care, even if it might be to that resident’s detriment.  When she was living in her own home, she had that right – nothing’s changed – only her environment.
  • The resident can even choose to move out of the long-term care facility if she chooses.  Don’t forget, it wasn’t her decision to move there anyway.  Long-term care housing isn’t a prison – she can leave if she wants to, even if doing so goes against the wishes of the family, and against the advice of her physician.

The bottom line is that residents in long-term care facilities aren’t children who need someone else to make decisions for them.  Granted – some residents with major cognitive decline may rely on others, such as a Power of Attorney (POA), to make decisions for them – but even then, that POA should be making decisions that the resident would have made if he/she were still capable of doing so.

Put yourself in your parent’s or grandparent’s shoes.  How would you feel if your opinions, wishes, and rights were dismissed?  Feels lousy, doesn’t it?

Blogger Awards for You and Me!

Thank you “Let’s Talk About Family” fellow-blogger for nominating me for the Versatile Blogger Award.  That’s the kind of feedback I like!  More importantly, everyone should check out her Blog because her insights into the ups, and downs, of caring for parents is very insightful and well worth following.

I have been so blessed by the input I receive from the many Blogs that I follow.  I’m going to use this opportunity to make some nominations as well! (I could list many, many more, but to begin with at least, I’ll list just a few that always stand out to me.)  First of all the steps that the nominees need to take to award others who are worthy of singling out:

  1. Thank the person who nominated you for an award;
  2. Copy & paste the award logos in your blog, as well as in the sections devoted to your nominations, below;
  3. Be certain to link the person who nominated you for an award; in my case, you’ll see that I’ve linked “Let’s Talk About Family” when I thanked her for nominating me;
  4. Nominate your own choices for awards;
  5. Place links to their Blogsites so that others can view their fine work;
  6. Say a few things about yourself so that others understand a bit more as to where you’re coming from – and where you’re going:
  • My first name is Irene and I live in the Seattle, Washington area.
  • I’m a Baby Boomer who loves to share knowledge about the challenges, and delights, of being in this age group.
  • My working background of the past 20 years includes being a paralegal in law firms as well as for corporations; an Executive Assistant and Office Manager for a senior housing company; a Business Manager in an assisted living/dementia care facility; an Alzheimer’s Association caregiver support group facilitator; and a certified long-term care (LTC) ombudsman for the county in which I live.
  • I became a LTC ombudsman in 2008, thereby leaving the senior housing industry, because in my mind one can never do enough for the vulnerable adults who live in long-term care residential facilities.  In order to assure that vulnerable residents experience a dignified existence and a high quality of life, I had to switch sides and become their advocate.
  • I will always try to write something about which I am familiar and that I have also experienced.  I’m not an expert, but my goal is to always provide input that I hope will prove valuable to others.
  • My mother died in 1994 and from 2004 thru 2007  I was the primary long-distance caregiver for my father who lived in an assisted living community’s dementia care unit.

Now onto the award nominations!

Versatile Blogger Awards:

Day by Day with the Big Terrible A (Alzheimer’s, of course.)  This blog is very reader-friendly.  This blogger is a wife who is taking care of her husband.  Her mini-entries very clearly reflect the struggles she, her husband, and her family face but she also makes room to celebrate the little victories that sometimes are hidden within the caregiving struggle.  I think all of us can find comfort in this woman’s efforts, and her ability to describe those efforts deserve 5 Stars!!!

My Simple C.com.  This blog is an online community that seeks to connect professional caregivers with family caregivers.  The resources and suggestions are quite good and are provided without the intent of selling anything.  Virginia Lynn Rudder works for a company called Simple C, but she clearly has a goal of providing information in an easy to read, comprehensive, and supportive manner.

Elder Advocates.  Lark E. Kirkwood experienced something that no one should ever have to experience.  A guardianship was put in place limiting access to her father who was suffering from Alzheimer’s disease, and who has subsequently passed on.  Please visit her site because she provides many valuable resources relating to a prevailing problem for vulnerable adults: elder abuse & fraud.

BEAUTIFUL BLOGGER AWARD.

Flickr Comments by FrizzText.  This Blogger really knows how to take a photo and knows how to find them so that we can take a break in our very busy days and simply enjoy his view on our world.  Please make a point of stopping by and you’ll be representing one of the more than 100 countries that partake of his Blog site.

Baby Boomer + Aging Parent = a changing paradigm.

Planning for a wedding?  FUN!!!!!

Putting together an extended vacation to a tropical paradise?  EXHILARATING!

Figuring out how to help mom and dad with their increasing care needs?  UNEXPECTED!

Logo of NPR News.

(Photo credit: Wikipedia)

A recent National Public Radio (NPR) Story: Preparing for a Future that includes Aging Parents addresses the unexpected, and the unplanned for.  Whether because we’re kidding ourselves or we really believe it, we oftentimes can’t imagine our parents as anything but the energetic, robust, independent mom and dad with whom we grew up.  And if we don’t live near them, we’re falsely sheltered in our assumption that mom and dad are doing just fine; at least they were the last time we saw them during the Holidays!  If we’re honest with ourselves, however, we’ll admit that our infrequent visits with the parents shock us greatly as we notice a bit of feebleness in their manner, because as the above story states, “time does what it does.”

Surprisingly, only 13% of some 4,000 U.S. workers surveyed for the 2011 Aflac WorkForces Report considered that the need for long-term care would affect their household.  We love to live blissfully ignorant, don’t we?  We have so many of our own stresses and pressures associated with running our family household, we’re just not going to entertain having to be on-point with our parents’ needs as well.  Guilty!

Taking a walk with my Dad.

I became a long-distance caregiver in the Seattle, Washington area for my father who lived in an all-inclusive facility called a Continuing Care Retirement Community (CCRC) in Southern Oregon.  The first eight years he lived there were worry free because my father was one of those robust parents who was on the path towards living to a ripe old age.  He did live to a ripe old age, dying at the age of 89, but from the age of 84 until his death, Alzheimer’s invaded our family’s peaceful existence, and I found that even as a long-distance caregiver, I was on-point 24/7.

Caveat: my parents had purchased long-term care (LTC) insurance so none of us three offspring were financially responsible for my father’s care.  But anyone who has been a caregiver for a loved one knows that care isn’t always equated to monetary expenditure.   In my case, the constant need to travel to Southern Oregon to monitor his care and be the designated (self-designated) sibling best equipped to coordinate his care with the facility’s staff, lead to my decision to temporarily leave my career, which was, coincidentally, one in the long-term care housing industry.  By the way – the answer was not to move him up to the Seattle area.  His financial investment in this CCRC up to that point rendered that an untenable option.

Even though I absolutely relished this opportunity to give back to my father – and I truly did – it was very difficult on my household and me.  My health temporarily suffered.  Everything I did revolved around being available for my father and hopping on a plane at a moment’s notice.  I lived in a five year period of dreading the ringing of my home phone or mobile phone because it most likely meant that something needed tending.  And getting home and finding NO voicemails in our phone system was cause for celebration.

  But enough about me.

Are you prepared for the eventuality of attending to your parents’ care or are you already on that journey?

Or maybe you are already caring for a spouse with medical or cognitive needs.  How are you managing that difficult task?

Let us hear from you.  Not talking about it won’t make it go away.  It’s time to face the piper and be as prepared as we can for the inevitable.

Retirement communities: the good and the bad.

In the April 2012 issue of the AARP Bulletin, two articles caught my eye.  The first article, “To be a Bride Again at 100″ (attached is the video link) celebrates the marriage of Dana Jackson, 100 years old, to her groom, 87 year old Bill Stauss.  This is a love story between two residents of a nursing home in Bowling Green, Kentucky.  This nursing home celebrated their love, and their death-do-us-part vows, in such a lovely way.  The management and staff of the nursing home exhibited a wonderful sense of community and support of Dana and Bill.  Whether they realized it or not, the staff at the Rosewood Health Care Center helped the newlyweds exercise their rights as long-term care residents.

The second article in the Bulletin’s column, What an Outrage, “Barred from a fine dining restaurant,”  shines a spotlight on a Virginia retirement community that not only did not exhibit a sense of community and support, but they quite literally violated the rights of a husband and wife living there.  When the husband’s care needs required him to switch to the skilled nursing care portion of the retirement community, while his wife remained in the independent living portion of the community, their meals together were abruptly stopped.  The wife could continue to dine in the fine-dining restaurant of the retirement community, but her husband was barred from doing so.  He and the other sixteen nursing care and assisted living residents were required to eat in their own separate dining room.

Harbor’s Edge retirement community had a couple non-fatal choking incidents involving three of its nursing care and assisted living residents in 2011 so a new rule was put in place segregating the more inform from the less infirm, even going so far as to ban the more infirm residents from attending events where food was served.  Keep in mind, residents in this retirement community make a sizable deposit to live there, to the tune of a half million dollars, PLUS a $5000 monthly fee.  I guess money doesn’t buy happiness but it sure should have bought these residents the right to eat where they pleased!

The outcome: the Virginia Department of Health was contacted and soon thereafter, the ban was lifted.  In Washington State, laws are in place to protect the residents of long-term care (LTC) facilities so that these residents can experience a dignified quality of life.  Vulnerable adult residents are guaranteed specific rights by law.  Revised Code of Washington )RCW) 70.129.020 Exercise of Rights, says in a nutshell that a resident has a right to a dignified existence, self-determination, and communication with and access to persons and services inside and outside the facility…The resident has a right to be free of interference, coercion, discrimination and reprisal from the facility in exercising his or her rights.  The remainder of RCW 70.129 further details all the civil & resident rights afforded vulnerable adults in the State of Washington.  If in your experience you suspect that someone’s long-term care resident rights are being violated, please contact the long-term care ombudsman program in your state by visiting the attached weblink for the National Long-Term Care Ombudsman Resource Center.

What great, and not so great, experiences have you had relative to long-term care residential living?  I would love to hear from you so we can celebrate the good, and expose the bad, for all of our benefit.

Long Term Care Insurance scares me.

insurance, n. A thing providing protection against a possible eventuality.  Concise Oxford English Dictionary, 11th Edition; 2004.

Result of a serious automobile accident

Image via Wikipedia

Auto insurance (a requirement); home or renters insurance; health insurance – we understand these policies and know that more likely than not the need for the aforementioned insurance policies will rear its ugly head in the near or distant future so we pay the premium for said policies, hoping we won’t need it, but sleeping better at night because we do.

Why is purchasing long-term care insurance such a difficult step to take for me and my husband?

  1. Unquestionably, it’s expensive;
  2. Fearfully, companies who offer this product are going out of business left and right and may leave us holding an empty bag;
  3. Definitely, it’s a real difficult type of policy to understand; but
  4. Undeniably, the financial need for it can outweigh the cost of purchasing it.
New Orleans, 1942. Doctor at Marine Hospital p...

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My husband and I have still not made an effort to look into it further.  Here are my two reasons based on family experience – both of which tend to contradict each other:

My father’s long-term care insurance policy.  My father had a long-term care insurance policy for which he paid premiums for at least 20 years – no small amount of money to be sure.  He was diagnosed with Alzheimer’s at the age of 84 and died five years later.  His care needs at the retirement facility in which he had lived for 13 years didn’t meet the insurance reimbursement threshold until his final month of life.  As with most policies, the insurance holder’s care needs must meet a defined level of care before the insurance company kicks in their assisted living care reimbursement payments.  When that happens, the insurance holder no longer pays any more premiums.  Twenty years of paying premiums for one month of reimbursement benefit.

My sister-in-law’s long-term care policy.  My brother and sister-in-law purchased their long-term care insurance policies when they were in their late fifties.  Less than a year later, my sister-in-law was diagnosed with early-onset dementia and approximately two years later drew benefits from her policy.  A couple of years of paying premiums for what will be years of reimbursement benefit.  If that isn’t the good news/bad news of long-term care insurance I don’t know what is!

I have no excuse. I know the devastating costs of long-term care because in my past professional life I worked for a senior housing provider and they represented the Champagne & Chandelier variety of assisted living.  But even the generic assisted living providers charge high rental rates and as ones’ care needs increase, so do the care fees.  This isn’t avoidance behavior on my part and I’m not squeamish about the subject of health and ones’ eventual death.  I’m just finding it hard to take this leap into signing up for insurance, even though it holds the assurance of fending off the potential of total personal financial collapse without it.

How are you Baby Boomers dealing with this subject?  If you finally bit the bullet and purchased a policy – how did you finally take that leap of faith?

I AM NOT LOOKING TO BE BOMBARDED BY SELLERS OF INSURANCE AS A RESULT OF THIS BLOG ARTICLE SO PLEASE DON’T GO THERE.  But I welcome other constructive feedback for those of us on the brink of making this difficult decision.

Navigating the maze of long-term care housing choices.

The most comfortable decisions you can make in life are well-informed ones.  Whether you are choosing a vehicle, the vacation of a lifetime, or a potential residence, doing so is made easier when you’re armed with essential information.  Oftentimes when inundated with too many choices, we exclaim that we would rather have fewer options from which to choose.  “Give me two choices and I’ll be able to decide – six or more? Forgetaboutit!”  There is one time, however, when you will welcome a diversity of options: selecting appropriate care in your Senior years.

Identifying the person in need of care.

Gazebo at dementia unit where my father lived.

This quest upon which you are embarking may be your own personal quest.  You know staying in your current home might prove dangerous to you – and therefore inadvisable – in the years to come.  Or perhaps you just want to retire from doing house repairs and weekend yard work -and who doesn’t?  Whatever the reason, you’re considering your options for when you might be less able to take care of your daily needs.

Another scenario is that your spouse, parent or sibling is in need of some sort of long-term care resultant from a debilitating condition such as cognitive decline, mobility restrictions and/or advancing age, so you’re trying to discern how best to address the care needs associated with their condition.

There are two primary care options from which to choose:

  • Aging in Place – This blog posting addresses the option of staying put and making adjustments that modify a residence to suit your needs or that of your loved one.  Also included in this option is the potential for hiring in-home care.  Both of these options allow a person to remain in their home for as long as possible.
  • Long-term care (LTC) housing options.  In a future posting I will address the available categories of long-term care (LTC) housing and will provide resources that should be helpful towards choosing a replacement for your current residential situation.

Both options have Pros and Cons involved with them.  But only you know what best fits your personal situation.

Aging in Place: I don’t even want to think about moving!

Aging in Place refers to living where you have lived for many years using products, services and conveniences to enable you to remain where you are.  To successfully age in place without moving you will most likely need to accommodate the physical and cognitive changes that may accompany aging.

Structural changes.  Both the inside and outside of the home could eventually require some structural adjustments to accommodate a person’s current – and future – needs.

  • If you live in a two-story house and your primary bedroom and bathroom are upstairs, does your bottom floor afford a bedroom/bathroom alternative?
  • Are you financially prepared for the costs of making the inside of your home more accessible, e.g. wider doors for wheelchairs or walkers; lowered counters to accommodate same; showers that can accommodate someone confined to a mobility aid?
  • Does the outside of your home allow for the addition of ramps and railings for easier access to the residence?
  • If one of you has cognitive decline and is prone to wandering outside of the house – what measures, if any, will assure this resident’s safety?
  • If you need care assistance during the day, are you comfortable having a health care provider in the home?  The costs and logistics of hiring and scheduling staff to come into your home can prove to be overwhelming and oftentimes more expensive than if a person moved into a residential community that readily offers the needed care.

How expensive is in-home care these days?  Caveat: I will not be addressing financing sources such as long-term care insurance, Medicare, Medicaid and the like.  My intent in these articles is simply to provide an overview of care options and potential costs.

The U.S. Department of Health and Human Services gives a 2009 run-down on costs for care options both in the home and in a long-term care residential setting.  I know that in Washington State, where I reside, the average Home Health Aide hourly rate is $22; the average monthly cost of an Assisted Living (AL) facility is $2870; and the average daily cost of a semi-private room in a nursing home is $225 which is approximately $6700/month.

Focusing on Home Health Aide/In-home care: based on the average hourly rate of $22, one could expect to pay close to $528 per day if based on an hourly rate.  Keep in mind, however, that most staffing agencies offer a monthly rate which will be less than the hourly rate.  But even with that “discounted” rate, in-home care can be very cost prohibitive.  A great many of us may not have access to that amount of cash and if the need extends out to several years – now it’s really adding up.

So why even think of remaining in one’s own home if it’s so %#^%($ expensive?

All of the above is not to suggest that Aging in Place is not doable.  Many people around the nation are successfully aging in place so why shouldn’t you have a crack at it?  Consider this alternative: some people start out Aging in Place and then transition into a long-term care housing situation when finances, or circumstances, warrant such a move.  We’ll look at those options in a future blog post.

Some links of interest: Alzheimer’s Association Carefinder service; Leading Age; Federal Govt Senior Topics.