Considerate Caregiving

This blog is intended to reach out to those faced with Alzheimer’s and other forms of dementia. If you are the individual with the disease or a family member, we hope to offer good information, emotional support, resource tips, interaction on real issues and a laugh or two. We hope you will give us feedback on content and how we can better reach out to those feeling alone and uncertain.
The Men of the House

It is not unusual to see the men who live in our care homes take on a very tender role where weaker residents are concerned.

A couple of fellows who were in better shape than one of our female residents used to call her “the baby” and tuck blankets around her in her recliner.  This happened several years ago when we were new to the operation, and I remember being stunned by this simple act of concern.

As one of these men aged, another man used to help him and hold his hand when they walked together.

Recently, one of our younger residents took on the responsibility of helping another resident eat.

The adult children of our prospective residents are sometimes conditioned to think that their parents gain the most satisfaction when being entertained with games and activities.  I think the evidence suggests that real satisfaction is found in helping others, even at a very advanced age.  The men of the house particularly seem to retain a strong sense of chivalry.

This Father’s Day we will have an opportunity to honor those Dads who are still with us.  We understand that isn’t always easy for those who recall the man of the house of their youth having imperfections.

At ComfortCare, we make a conscious decision every day to honor all the men in our homes as if they were the greatest fathers or uncles or mentors to ever impact the life of a child.  If you have a father who needs more care than he is receiving, we invite you to come see the difference it makes in the lives of the men of our houses when we give them honor, dignity and respect.  We know of no other way to live.

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A Mother’s Care

In our care homes, we typically have two ladies taking care of our residents around the clock.  The lack of male caregivers is not by design but just reflects our applicant pool.

One of our former residents in her 90s who I’ll refer to as Ethel did not feel she needed much care and thus became accustomed to referring to the caregivers as “the mothers,” a bit of a jab from her viewpoint that the caregivers were overprotective.  If she couldn’t find them, Ethel would say “where are the mothers?”

In the reverse of this situation, a 45-year old friend of mine living in a country formerly under British rule refers to his mother as “Mummy.”  He was ill when she recently stayed in his home, so she nursed him back to health “as only a Mummy can do” in his words.  I didn’t ask what his wife of nearly 25 years thought of this comment.

Regardless of our age, if we are fortunate to have a loving mother in our lives, we will pay them tribute this Sunday on Mother’s Day.  As mothers age and decline, a role reversal takes place where they transition from care-provider to being cared for.

At ComfortCare, we view it as a privilege to provide the loving care of a mother to our residents.  We invite both sons and daughters to tour our homes and see the difference our motherly care provides.

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Ethics in Long-Term Care

Live is full of gray areas, and our freedom as American citizens gives us the opportunity to make multiple choices every day.  As a person who has the tendency to think every question has a logical, linear, definable solution, I admit that gray areas are confounding to me sometimes.

I’m not indecisive, I’d rather just have some of life’s simpler choices made for me.  For example, I was taught as a child that dairy products are good for me, but now some say that isn’t true.  Hearing that white cheese is better for me than yellow cheese, or that goat cheese is the answer just makes me tired.  Could we just settle the issue once and for all?

It seems to me that healthcare decisions often fall into gray areas, but when human lives are at issue, I think the consideration of ethics is important.  When a 99-year old person can benefit from surgery by gaining mobility, there are risks, so a surgeon must decide whether to advise the patient to have the procedure.  When that advice is given, should the ethics of financial compensation come into play?  I’d argue that it should.  Much of healthcare reform revolves around compensation of providers for services, as opposed to compensation based on outcomes.

In long-term care, we can on one extreme create a surplus of safety that limits the independence of the individual.  On the other extreme, financial concerns can result in poor outcomes when facilities are too under-staffed to provide the level of care the residents require.

Measuring a healthcare provider’s ethics is difficult work in a world of gray, relativistic thinking where “good” is often defined is “not as bad as the others.”  However, even in the gray areas there are bright line standards that should not be crossed.  You can make good decisions by looking at the company a person keeps, by looking at past performance as a predictor of future outcomes, and by asking probing, open-ended questions about the provider’s propensity to take unnecessary risks in providing care.
If you are in the position of evaluating long-term care providers, don’t shy away from the “E” word.  Ethics still matter to the health and well-being of your loved one.

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Be Prepared

From what I’ve studied, about 70% of us who reach age 65 will have a time when we need some sort of assistance with our “activities of daily living” (bathing, meals, walking, etc).  It may be physical or cognitive impairments that cause us not to be able to enjoy living independently as we age.

The breadth and depth of options for long-term care are expanding and will continue to do so as those from the baby-boom generation reach retirement age in greater numbers.  Care takes place not just in facilities, but at home as well.

Since I entered the workforce, I’ve been continually engaged in one form or another in finances.  In those 32 years, I’ve come to believe that facing economic reality is the hardest step for any company or individual when planning their finances, followed by having the courage to act on a plan to address what was learned.

Recently I received a great handbook that walks through the issues of cost, needs, and options for long-term care assembled by the National Association of Insurance Commissioners (NAIC).  The booklet is called A Shopper’s Guide to Long-Term Care Insurance.

The part about buying insurance isn’t what I found helpful in this booklet.  What I liked about it is that simple language is used to reduce very complex topics to easily understood bits of information.  I think everyone who is nearing age 65 or who has a family member or friend nearing retirement age should get a copy, even if they have no intention of purchasing an insurance policy.

You can reach the NAIC at 816-842-3600.  I received my copy of the NAIC booklet from Jennifer Lauritsen at Thrivent Financial in Ottawa at 785-229-0891.

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Underdogs, Misfits and the Art of Battling Giants

The above was the subtitle of Malcolm Gladwell’s book titled David and Goliath.  Reading it has my mind churning with newfound perspective.

In my article of January 14, we noted that the average direct care hours we provide is double that of the average skilled nursing facility.  Yet these Goliaths with large institutional buildings are seemingly the Giants of senior care.  Brookdale, for example, has some 100,000 residents nationwide.  We have 22.  I think that qualifies us as the proverbial David when we compete with the large facilities, which is the situation we find ourselves in every day.

We are attracted to stories of lopsided conflicts – where the underdog battles through and wins against the odds.  ComfortCare is the seeming underdog and misfit, with no weapons suitable to defeat the Giants.

Trying to play the Giant’s game is rarely successful.  To win as an underdog you need the belief that you can win – and this often comes from having a higher purpose.

Gladwell’s premise is that David was never the underdog against Goliath.  He envisions a Giant who was only comfortable fighting in close battle with swords due to vision issues because he invites David to come closer.  He mistakes David’s expert use of a sling as a couple of sticks.  This guerrilla tactic was unexpected but gave David a decided advantage.

In his research, Gladwell found that Ivan Arreguin-Toft analyzed all the wars over the past 200 years. When he looked at one-sided battles (where one side had 10x the size of the population to the other), he found the larger country won 71.5% of cases. However, when he looked at those cases where the smaller country fought with unconventional tactics (such as guerrilla warfare), he found in these situations they won more time than they lost – in these situations the underdogs won in just under two-thirds of wars (63.6%)!

To win against the Giants, the Davids need to adopt different strategies. But most of the time underdogs don’t fight like Davids as they blindly accept the rules of the game as defined by the dominant players.

It is by being unconventional that ComfortCare enjoyed some 95% occupancy in 2016, because our humble size is our advantage.  By being small and nimble in adapting to change, by providing care to fewer residents in smaller buildings, by having intimate relationships develop between residents, caregivers and families, and by having a higher purpose—a focus on care instead of the bottom line—ComfortCare enjoys a great asset the Giants don’t have.  Giants warehouse the elderly and cut the hours of care, they don’t have the time to know residents or families intimately and thus their gargantuan size and budgets end up being their downfall as they are unable to provide the care those with cognitive impairment and physical limitations really need.

Don’t take my word for it, but listen to this recent post from one of our families on our Facebook page in response to my January 14 article:

The care your loved one will receive at ComfortCare is outstanding. My Mother was a resident of ComfortCare in Baldwin for about 18 months and not once did I have to worry that she was receiving excellent care. That was truly a blessing since I lived in Virginia and visited every 3 or 4 months. Thank you to everyone at ComfortCare for the love and care you give to all your residents.  Judith Briscoe

Visualize our love and compassion captured in video at comfortcareks.com.  Feel the ComfortCare Difference.  

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A New Year’s Pledge Worth Keeping

Not to be melodramatic, but this New Year’s resolution can have life-changing consequences. If your desire is to find better care for your loved one, parent, spouse or an elder you are close to, this is a pledge worth keeping.

People have been trusting us for more than five years to care for their loved ones, and that requires being a straight shooter, so I’m giving it to you straight. Because we want something better for our parents than our grandparents had, in 2011 we engaged in a model of care that disrupts normal healthcare practices.

According to the Kansas Health Care Association, traditional nursing facilities provide 2.4 hours of direct care per day for each person residing in their facilities. In our small neighborhood homes, the average is 4.7 hours of direct care per resident.

This is life-altering because good caregiving takes time. Caregiving cannot be automated, rushed or scaled. To be personalized and highly relational, it must be done one resident at a time. We spend more time with your loved one to ensure great quality care is being provided in large quantities on a one-to-one, highly relational basis.

Some implications of elder placement are measurable. In a survey of some 1,800 traditional nursing facilities, the longevity from admission to death was found to average 14 months. In examining the results for our home in Baldwin City, open for nearly six years, I found the average stay is 31 months. We can’t know why our residents live longer. We can only speculate that providing substantially more care allows our residents to thrive, to enjoy emotional well-being and to have a greater desire to live. If not a greater quantity of life, great care certainly results in a greater quality of life.

In this short article, we can’t completely address the concept of cost. What should be stated is that Medicare, as opposed to Medicaid, only covers a short period of rehabilitation after a period of hospitalization. Medicaid does cover long-term care stays where Medicare does not, but an unmarried person must generally have less than $2,000 in assets to qualify. Simply put, Medicaid only provides when a senior’s resources have been legally exhausted. Stripping a senior of assets to qualify for governmental assistance should involve legal counsel to avoid inadvertently committing Medicare fraud. Many, if not most, of our elders will pay out-of-pocket for long-term care until they reach the $2,000 threshold.

Our vision for Ottawa is to provide a beautiful neighborhood home, outstanding personal and individualized care and an unsurpassed quality of life to a small number of residents, and to be a resource to their families. We exist to fulfill that vision and help you give your loved one the care they need.

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Guilt Relief and the Holidays

Particularly as we near the holidays, I want to share with you a word about guilt.

If you are reading this, you are likely caring for an elderly loved one in some capacity or another.  When we talk to families about their loved one moving into one of our homes, we always remind them we are in the guilt relief business.  The source of guilt may be related to feeling inadequate to care for a loved one at home, from not visiting enough, from the comments the cognitively impaired person makes, from baggage with the elder, or any of a hundred other sources.

Please understand that it is entirely appropriate for you to be relieved of your guilt.  The burden is too heavy and you should not carry it alone.

A few observations about the reasons we feel the emotion of guilt:

  • Regarding your loved one’s care, when a person cannot live alone the work is 24 hours a day, 7 days a week, 365 days a year.  When we create a caregiver position that is 24/7/365, we hire 4 people as the work week is 168 hours, not 40 hours. You as one person cannot feel guilty when the truth is that it takes 4 people to replace you.
  • On baggage, the elder has those feelings about the past because they either could not forgive or could not forget an unfortunate incident in his or her life.  You cannot take responsibility for another person’s thought process.  If you played a role have not apologized, do so and be done with the issue.
  • On visiting, know that your cognitively impaired loved one cannot calculate the time you spend with them during the holidays, nor does she have the same responsibilities you have.  Even when the elder is not impaired, you may have a built-in sense of guilt no matter how much time you spend with him.  So you must believe that the visit is partly for your peace of mind, and the amount of time you stay is long enough.  With the cognitively impaired, 15 minutes is a long enough visit.\
  • On feelings, whether comments made to you come from someone impaired or not, another person can only make you feel guilty if you give them permission.  Every location has doors.  Let those doors symbolically close on your feelings when you leave the room your loved one is in.  Leave the guilty feelings behind you when you leave that room.

The spiritual person is invited by the Bible to cast his cares on the Lord.  In any case, you need to cast your cares on someone.  If there really is no one to speak with, write it in a journal and close the door on your guilt when you close the cover on your journal.

You’ve read this far because you are a caring and loving person.  You deserve to be at peace.  So as you close the window on this blog, give yourself 15 minutes of personal enjoyment.  Flip through a magazine, take a walk, listen to music or do whatever recharges you.

Guilt relief is yours for the taking.

Reach for it.

And have a blessed holiday season.

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Alzheimer’s and Activities, Part 2

Part 1 of this article should be posted nearby.  If you read that, you know that I struggle discussing “activities” with families who tour our memory care homes.  For me, the good news is that by writing this down, I realize I need a tool or handout to help me.

I came to the word Engagement in the first part of this article.  I defined it.  Now I’ll take a shot at suggesting simple solutions.

Environment

In our homes, which are just regular neighborhood houses before we retrofit them into care homes, we start by creating the best setting we can for a resident with cognitive deficits in which to live.

Exercise relieves stress.  Chances are our elders have trouble exercising, and probably didn’t enjoy regimented fitness anyway, so we keep it simple and pour a sidewalk around the yard for a safe walking path.  Those who use walkers or other assistive devices, as well as those who don’t need them can take a spin around the path and enjoy the benefits of fresh air.

Second, we have a water feature in the yard.  The sound of flowing water soothes most people.  Combined with the aesthetic view of a fountain or waterfall, chirping birds, busy squirrels, and shady trees, this provides a calm environment that creates…well, a calm and peaceful place to live.

Inside the home, we have the family bring in furniture, photos and paintings, and other reminders of home.  We use plates and glasses at meal times that are functional over using something that may look nice but does not result in the best nutrition and dining enjoyment.

Our TV programming is minimized, sometimes being replaced with radio, and always, the viewing and music is soothing and suitable for our elders.  We purposefully want a low-stimulation environment to minimize agitation and confusion, which result from overstimulation.

Caregivers are trained in redirection, speaking in respectful and kind tones, and steered away from reality orientation.  To put it simply, we meet the residents where they are on any given day.

Our meal times, bed times, bathing and daily living functions are on the schedule of the resident, not on our schedules.

We bring health care to the homes, rather than transporting the residents to the care.

The “schedule”

Now that the environment is set, we generally, and I repeat, generally plan breakfast around 8am, a cognitive activity like reading the positive articles in the paper or a word game around 10am, bathing, a meal at noon, physical activities around 2 to 3pm such as walking or range of motion, the evening meal at 5pm, and soft lighting and lower stimulation after 6pm.  

We know residents will ask to retire early, so we really reduce the stimulation after the evening meal.  We know a symptom called Sundowning will begin around 4pm, so we draw the blinds or help the affected residents find a peaceful place such as their room or in a chair outside at that time.

We know those who are 95 sleep more hours per day than those who are 75, so we anticipate this.  

Success in Every Day Living

Here’s an observation:  People don’t change from being sedentary, inactive 75 year olds into active, enthusiastic 85 year olds the day they move into a care home at age 85.  

At admission, we seek out information about likes and dislikes, past occupations, favored food and past times, interests, religious needs, family relationships (positive and negative), and anything that will help us get to know our residents well.

We know success in adjusting to the new home takes 2 hours for some, 2 months for others.  Generally, we expect to see the beginnings of successful living in 2-3 days.

Every day living for typical 85 year -olds might include sweeping, feeding the birds or pets, preparing parts of a meal, loading a dishwasher, folding laundry, working puzzles or reading, so we find and continue those activities.

In later stages of cognitive impairment, we read to residents.  We ask them to sort things into matching groups.  We lay a “fidget quilt” across their laps that has objects sewn on that can be handled (see our featured image for an example).  

We give them love, laughter, play with balloons, and generally engage them in everyday activities.

Summing up

In that last sentence, I got in both words.  “Engage,” and “activities.”  So to coin a popular phrase of the day, “that’s how we roll around here.”

I hope these articles have been helpful and relieved your anxiety as a family caregiver.  Loving your elders makes you my hero.  In our homes, we try to be like you and work in what we know, and in the end, we see happy, adjusted residents.  We hope you see the same.

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Alzheimer’s and Activities, Part 1

“What do you do for activities?”

When I give families a tour of our memory care homes, it is the hardest question to answer.  It is much easier to explain the intricacies of Medicaid!  Particularly if the question is phrased in a way that is more accurate for many who suffer from dementia, which is “Mom isn’t interested in doing anything, what do you do here for activities?”

First, let’s “unlearn” the term “activities.”

Facilities are desperately trying to reverse the term they created by calling their activity specialists Life Enrichment Coordinators, Lifestyle Leaders, Community Program Directors, Leisure and Well-being Coordinators and many other terms.

Societal Trends

We’ve lost the picture of our elders sitting on a porch drinking iced tea and watching cars, children and pets pass by.  We no longer watch people in airports while waiting in the gates, we look down at cell phones and furiously text, email, message or tweet.

Nobody used to ask the day care provider what the children would be doing, it was obvious they would be playing with age-appropriate toys, playing games, sliding down slides, and imitating grown-ups.

Now, we have children shuttled from school to soccer practice, violin lessons, dinner, and more…yes, activities after dinner.

Guilt

Families probably don’t realize that their elderly mother being awake 70-80 hours a week causes them consistent feelings that she needs to be constantly entertained.  

If you are reading this, your cognitive function is probably pretty good.  Imagine if someone was tending to you 10 hours a day, trying to entertain you.  You’d be exhausted.  Now imagine that you lack the cognition to process the stimulation being presented to you.  You’d be agitated.  

That’s the pattern.

So please, no more feeling guilty, and no more over-stimulating Mom.  She’s ok just “being.”  I promise.

Engagement

Here’s the new term thou shalt use:  Engagement.  We engage in things every day by choice.  Tonight, my wife and I will be engaged in eating, then we will engage in talking about our day, then we will fall asleep.  No one will stimulate us, yet we will not feel bored, left alone, or un-entertained.  In fact, when our dog pesters us after walking him and playing with toys with him, we will have to summon up the courage to provide discipline so he will stop agitating us.

Ok smart guy, define engagement in your care homes.

Um, well, uh…here’s where the stammering begins.  I have trouble defining it, but I know good engagement from bad engagement when I walk around our homes.

Here’s my best shot:  Relating to a resident in a way that is exactly how they would like to spend their day.

Now, each person will need something different on any given day.

The engagement will need to be personalized to their health, mobility, frailty and level of cognition. We then need to consider their desires for socialization, what leisure interests they had previously and the like.

In addition we need to observe them, experiment, talk to families and be reactive to each person’s mood and feelings, how they slept, the stimulation they had recently and other factors.  Did a visit from a family member last longer than usual?  Did they forget the name of a grandchild and feel badly?

Ok ok, sounds complicated.  Give me simple solutions.

Tune in for Alzheimer’s and Activities, Part 2 and I’ll give you my best effort.  

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National Alzheimer’s Disease Awareness Month

 

Pink in October for breast cancer awareness.  Purple in November for Alzheimer’s awareness.

Let’s talk purple for just a few moments.

  • New cases of breast cancer annually: 246,000
  • New cases of Alzheimer’s annually:  473,000

These numbers surprised me, and I think about Alzheimer’s every day for a living.

Unpaid family caregivers, some 15 million of them, have a loved one with Alzheimer’s.  And that is just one disease that results in cognitive impairment.   These folks suffer burnout, depression, and physical exhaustion in growing numbers.  Not only is it hard and emotionally taxing work, it goes on 24/7/365, as you never know when your loved one will sleep, wander or need assistance.

Please, let’s just take a moment and honor them, recognize them, hug them and love them.

They probably haven’t had time to become aware that Purple is their loved one’s color.  Give them something purple and let them know your heart is with them.  Today.  This month.  Or any time.

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Copyright 2016
ComfortCare Homes of Ottawa & Baldwin City
All Rights Reserved.

ComfortCare of Ottawa
27 E. Rockwood Drive
Ottawa, KS 66067
(785) 242-1809

ComfortCare of Baldwin City
232 Elm Street
Baldwin City, KS 66006
(785) 594-2603

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